Gala night

image

The gala is tonight.  Thank you all again for your continued love and support.  It will be another night to remember for a cause so dear to our hearts.   If you would like to show your support but are not attending the gala … It’s not to late.  Please check out our auction avaible […]

Third Pregnancy

IMG_3453

Third Pregnancy. Third Boy. Three Weeks to Go. I cannot believe we are only three weeks away from our newest family member arriving. It seems serial that for the first time, after being parents for over 6 years, we will have two under the same roof at one time.   We feel mostly just excited to […]

A Foundation Research Update

Lola_1

It feels like my gaps between writing are getting longer and longer.  Truth is, I really miss writing … I just find the days slipping away from me between work, Koa and pregnancy (can you believe i am 32 weeks already, eek!!).  I am just not sitting down to gather my thoughts at the end […]

2nd Annual Gala

the dessert from last years gala

Time to mark your calendars!!  The second annual Living Like A Warrior Gala supporting Wylder Nation Foundation is all set for July 11th at the Denver Cable Center.  We are hopefully many of you will be able to make it (again). If you felt inspired and had a blast at last years gala, this year […]

The Wizard

IMG_7511

Those of you who have followed Wylder’s blog all these years know about “the wizard.”   Wylder’s amazing custom wheel chair that provided him (and therefore us) so much comfort for a year and a half of his life. Children with NPA loose their muscle tone and have a very enlarged liver and spleen making getting […]

Koa Turns 1

9

I cannot believe March 8th has come and gone and that our sweet Koa Padraig turned one year old.  I cannot believe how that time flew by. We are so ubundantly grateful for Koa, his health, his spirt and the joy he bring into our lives every day. Koa loves exploring, swimming, bath time, giving […]

Another Beautiful Blessing

FullSizeRender

I am so excited to share with you all that Steven and I are expecting another little one on July 23rd!!  That’s right, I am pregnant!!  We feel beyond blessed as we prepare for our third arrival. I am 20 weeks along in this pregnancy … half way there!  We know we are expecting another […]

WARRIOR Challenge

beawarrior

Rare disease day is just around the corner. This Saturday February 28th is a day where the rare disease community comes together to raise awareness as a group to show that rare is EVERYWHERE. As a united community RARE disease affects more people then aids and cancer combined. It is such an important day for […]

It’s been a while

IMG_0221

Has it really been since before Halloween that I have written? WOW! The time is flying by and I wish I could figure out a way to just freeze it for a minute. I have been missing writing so much. We stayed very busy over the holiday’s and enjoyed our first Halloween, Thanksgiving and Christmas […]

Fall is Here

Wylders Trip 175

It is hard for me to wrap my head around the fact that October is here. Is it really fall already? Where has this year gone? My excuse for not writing as often as my heart wants to …. is this sweet faced, VERY busy baby boy … that I just cannot get enough of. […]

Gala Refelction

wylder-71-of-358

I cannot believe it has been more than one month since the 1st annual Wylder Nation Foundation Gala.  Wow, time is just flying by.  Some nights when I go to bed, just missing Wylder so much … I think of that special night and how much He continues to do here and how grateful we […]

A San Fransisco Treat

Our families all together

Steven, Koa and I were at the National Niemann Pick Conference in San Francisco last weekend (I guess it was really 2 weekends ago already). It was a BIT easier then last year’s conference emotionally, because it wasn’t our first, and because we were surrounded by a few other Niemann Pick type A families. That […]

A long over do update

koa's eyes are the exact color of the ocean, no accident

How does the time fly between writing these days? Oh I know, travel, the foundation, a bout of mastitis that had me down and out for days, trying to figure out how tend to my clients with a baby that only wants to breastfeed, very real grief and a little one I just want to […]

What A Night!

wylder (36 of 358)

Saturday was a beautiful evening FULL of blessings. The love and support in one room was just incredible. The event was a great success and would not have been possible without YOU! Thank you, thank you, thank you. Through your generous donations and a $25K match from Giving Hope World Wide, we raised over an astonishing $100,000.00 […]

Auction

It’s almost time.  Butterflies are in full affect in my stomach with nerves, excitement for change and so so so much more.  This Saturday we will be with just over 200 of you, because of the biggest life I have ever know, my Wylder.  We will all come together for change and to help others. […]

Silent Auction

wylder-warrior-gala FINAL

We are full speed ahead with the Gala just 10 days away!  We are hopeful to have the silent auction up online a few days before the event.   It will stay online through the 12th for those of you that are not able to attend, but want to participate in the auction from a […]

Fun Fact

Map

Thank you all for your registrations for the BIG event.  We are really looking forward too it.  I am excited to share that so far we have 10 States being represented at the event …. how cool is that?! California (San Diego, LA and SanFrancisco) Arizona  Wyoming Massachusetts New York Florida Hawaii Texas Michigan Colorado […]

Countdown Mode

Wylder

It almost doesn’t feel real that the First Annual Wylder Nation Foundation Event is only a few weeks away.  July 12th is right around the corner!! As we are knee deep in preparation we are excited for what the night has in store.  This is going to be the start of something great for kiddos […]

Maui 2014

momma's boy

We are home sweet home.  Maui was beautiful as ever.  The trip was very hard as you can imagine, but we felt very blessed to be surrounded by such wonderful family. Koa did great on the airplane and settled right into Maui mode.  Having him on the island was so special.  We felt Wylder everywhere […]

He’s changing every minute

my new fav pict

Well dreamy baby Koa is still dreamy.  He is learning new things everyday and I am convinced (as all mommas are), that he is a little protégée.  He is growing so fast, weighing in at almost 14 pounds now.  He is most certainly my little big guy.  I am trying to soak in every moment, […]

Thank You

A little LA love

Thank you for Wylder’s birthday wishes.  We were once again feeling the love in abundance!  Your support continues to be a blessing that we do not take for granted as a family. We loved celebrating and talking about Wylder on his special day and watched video memories of him that we cherish so much.  We […]

Happy Birthday Wylder James

2011-09-17 13.59.05 HDR

Happy Birthday to You Happy Birthday to You Happy Birthday to my sweet, amazing, beautiful Wylder Happy Birthday to You. Sending you so much love in Heaven Little one.  At 3:43am on this day 5 years ago, you changed my life and my heart forever.  You made me a mom and showed me a love […]

Bittersweet Week

photo 3-3

Happy belated Mothers Day Wylder Nation mommas.  My absence in writing is not because you are all far from my mind, but only because being Koa’s momma, working part time, helping prepare for an event to honor the biggest life I have ever known … well, it’s all keeping my quite busy. My heart was […]

Boston Bliss

1979197_275673009280380_6978775585746415376_o

We got the skinny on the Boston Marathon from our pal Phil.  He said it was an amazing day!  A fantastic run for him, an unbelievable turn out of supporters for the team and certainly a represention of BOSTON STRONG.  He said he must have high fived over a half a million people that day […]

A Gift

2014-04-05 06.03.03

Koa Padraig is quite simply a dreamy baby.  He seems to be making motherhood as simple as possible and lets me smother him with love day in and day out. He smiles every single day, and even giggles now.  He loves to take long baths, which you know make him smell like Heaven on Earth […]

Hoppy Easter

a snuggle bunny

Koa had a wonderful first Easter.  I LOVE Easter … I love all Holidays, but Easter and Christmas really take the cake for me with kiddos (both for the “real” celebration and the Hallmark reason).  Koa’s day included dyeing  eggs, a little egg hunt, easter baskets, making cupcakes, brunch with family and a night night […]

Boston Strong

bostonmarathon2014

I am going to try and get back in the groove of writing a bit more often.  It has been very hard as there has been so much going on, and so many ups and downs this last month.  Our mojo’s have been very “off” to say the least, as our hearts have been both […]

True Love

photo 5 (3)

Thank you all so much for your respect and privacy these last few weeks.  We feel and appreciate your love, prayers and support always. You all have been very patient waiting for more pictures of sweet Koa.  He is such a delight, a Heavenly baby.  It is true love and we are just over the […]

No Words

papaandwylder

Yesterday the world lost any unbelievable man. It breaks my heart to announce the news that Steven’s Dad (David Laffoon Sr.) suddenly and unexpectedly passed away. Those of you that knew him can attest that he was the most compassionate, selfless, and amazing friend, brother, father, grandfather and all around gentlemen. God holds us through […]

Our Newest Family Member

image

He’s here!! Meet; Koa Padraig Laffoon 9lbs 4.5oz (yep!!) 21.25″ long Koa is a Hawaiian name that means strong, brave and fearless … a Warrior, just like his big brother.  The biblical meaning to the name Koa is hope.  A perfect name for a most beautiful boy. He is a healthy and happy was born […]

Success of Rare Disease Day 2014

wylder

Well, little “Bruiser” has not made his big appearance yet.  He seems to be comfy cozy and given all that we have been going through the last couple of days, in some ways I am glad he is still snuggled up tight.  As anxious and excited as I am to see his sweet face, I […]

Maddie

photo (1)

Madeline Keely July 31, 2001 – March 2, 2014 A best friend and most loyal companion.  Thank you Maddie.  We love you and we will miss you.  You are forever in Heaven with Wylder James.

It’s Almost Time

Laffoon Maternity vintage-26

Bruiser’s big due date is approaching … February 28th World Rare Disease Day!  I have been saying since the get go that I thought his arrival would be ON the 28th, given the importance of that date and connection to his big brother … but Friday seems further away than ever.  I am just filled […]

A Beautiful Tribute

photo

I have written about MGA healthcare a few times here on this blog, but they really are an amazing company worth sharing about over and over again.  Well, they have once again outdone themselves.  MGA healthcare is a provider here in the valley (and other states) that helps families get a home health nurse they […]

Putting Grief into Words

Valentines 2011

I find it difficult to put into words the process and feelings of grief and bereavement.  Horribly impossible.  I often want to write about it more to you all, as it is in our everyday life …. but putting the words to paper, it is hard.  Grief has a definite beginning, but the ending is […]

Madeline Keely

Maddie

Many of you have come to know and love our dog Miss Maddie from following our blog all these years.  She is certainly a high pollutant member of our family.  Although we refer to Maddie as our puppy dog, truth is that we have had her for 12-1/2 years.  Even though it feels like just […]

Capturing a Moment

Laffoon Maternity-42

How do you thank someone, friends, for capturing a memory that is so important to your heart? Last week we went out on an amazing photo shoot with our dear friends Amber and Warren, Willow Brett Photography, to capture Little Bruiser and the gift of pregnancy before his big arrival at the end of this […]

Hacienda Filthy

IMG_7900

I do not think I have really ever shared the story of “hacienda filthy” with you all.   Hacienda Filthy is our home sweet home.  No, not because we are filthy people … but because when we bought this home 5 and a half years ago it was a MAJOR fixer upper. Just about 8 weeks […]

Marathon Weekend

photo 1 (6)

What a weekend.  We went bell to bell each day and loved every second of having Phil here in the valley.   We felt completely blessed to have him once again running for Wylder, the friendship we have built, and to have him meet a few of our friends and family here in town. Each time […]

Marathon Sunday

14milemeetup

It’s almost marathon time!  The time has just flown by and the PF Changs Rock n’ Roll Marathon is THIS Sunday!!!  Phil gets into town from Boston tonight and we are SO excited. Here are our plans for Sunday morning.  If you are in the area please come by and show your love … WARRIOR […]

Nesting

Big Boy Whale Crib

I am in full fledge nesting mode.  Baby Bruiser (I promise that will not be his real name, tee hee) is coming soon.  I am sneaking up on 34 weeks along, and his scheduled arrival date is World Rare Disease Day … February 28th!!  Steven is thinking he will come a tad early, but I […]

Meet Amanda

cover

Amanda has done it again.  She has written another beautiful article introducing Wylder and the Wylder Nation Foundation to the DC Ranch and Gray Hawk area here in North Scottsdale.  Her words and ability to capture little Wylder always amaze me.  I am in awe of her kindness and abilities. (click on the photo below […]

RAK Day 2014

wylder summer 2012

It is so hard to believe this day is here once again, somehow every year it does manage to show up.  It is RAK (Random Act of Kindness) day.  A few years back on January 7th I decided to change Wylder “Diagnosis Day”  to a day where we would all do a random act of kindness […]

Wototo

IMG_0139

Steven and I had a great start to 2014 this weekend.  We felt completely inspired after watching the Watoto choir perform on Friday night.  These kids present Watoto’s vision and mission “through their music and dance, which is an energetic fusion of contemporary gospel and traditional African rhythm.”  This choir has been touring internationally since […]

Happy New Year

happy new year

We are traveling home sweet home today.  Steven and I went to the Denver Aquarium yesterday and it brought back many memories of our Colorado 2009 Christmas and Wylder’s first trip the the aquarium. We plan to spend a quiet new years grateful for the memories we will always have and those soon to be […]

Santa Claus come to AZ

21

Saturday was an amazing day.  Santa Claus came to town for HOPE KIDS again!  There was so much love in the room as the kiddos, their siblings and parents enjoyed visiting with Santa and Mrs. Claus over some chocolate chip cookies and milk.   Each kiddo left with a copy of Wylder’s books (“Warrior Baby” and […]

PF Changs Rock ‘n’ Roll Marathon

marathonphoto

PHIL IS COMING TO ARIZONA!!!!! Mark your calendars Wylder Nation, Phil is coming to the valley of the sun to run the PF Changs Rock ‘n’ Roll Marathon  to run for sweet Wylder James and all NPA Angels once again!!  Wow.  We are so excited to have him on our own turf running more miracle miles. […]

Last MInute Gifts … WARRIOR Style

IMG_7095

Another year has nearly come and gone.  It is hard to believe we are only one week from Christmas, yet again.  I have decided that peppermint popcorn is blowing Bruiser’s mind this season (tee hee).  2013 has certainly been a difficult year, but filled with many blessings for our family … once again reminding us […]

Room for Joy

emmitpict

We had an amazing weekend.   I feel very blessed that I got to have a small part in helping out with a BIG makeover for an incredibly special family.  Do you all remember me telling you about “Room for Joy” back in the spring?  Our friends introduced me to Tory who runs the amazing organization […]

Happy Thanksgiving Wylder Nation

sleepy boy (2010)

Happy late Thanksgiving Wylder Nation.  I hope your Holiday was filled with a lot of joy and that you had much to be grateful for.  Last year Steven and I were just not ready to host Turkey day, and really were not much in the mood for celebrating at all.  After much chatting this year, […]

Wall Street Journal

Hemple Twins

Many of you have seen this Wall Street Journal article going around Facebook, but I just had to share it here on Wylder’s blog too.  It is absolutely worth the read … just an incredible story. Steven and I knew this article was coming and we were anxious to read it,  but WOW, the magnitude […]

It’s beginning to look alot like Christmas

Bruiser's stocking!

It’s beginning to look a lot like Christmas at our little hacienda.  We are looking forward to celebrating Thankgiving next week with our family and friends coming to town and wanted to get the house looking festive.  My oh, my … every year I forget just how much work it is getting everything up and […]

ReCouping

IMG_5844

We made it home sweet home on Tuesday night.  We found ourselves busy with catch up the rest of the week with work, as well as needing a few days to let all of what we had learned soak in.  It was a great event at the Partnering for Cures in New York, and truly […]

Partnering for Cures

photo 3

Steven and I are in New York City for an event called Parterning for Cures put on by Faster Cures.  We have been really enjoying our time in the City … the last time we were here was January 2010 and we were taking Wylder to Mount Sianai Medical to meet Dr. Wasserstein. We started this […]

Halloween 2013

IMG_6417

Not to much to say today, holiday’s are just incredibly hard because Wylder made them so extra special.  Happy Halloween Wylder Nation, from the cutest little pumkin ever.  We hope your homes are filled with laughter, love and loads of candy treats.  xoxo  

C4RCD Clinic

19

I cannot believe I am just writing you all about this now.  I have been wanting to write, but the days feel so short balancing work, getting the foundation off the ground, pregnancy, missing Wylder and oh, life.  The TGen Center for Rare Childhood Disorder is officially open!! It looks beautiful and will serve children […]

23:20:42

8

23:20:42 are magical numbers … that is because  Phil did it!  As of this morning he ran his first 100 mile marathon with the strength and love of Wylder, Quinn, Trek, Lilly, Jacob, Kaitlyn, Faith, Riley and Amber.  It was an amazing 24 hours even for us from a far in Arizona.  We felt so […]

He is at it again, this time with a few friends

Phil

I spoke to Phil the other day.  The most awesome of awesome Phil who not only  ran the Boston Marathon this year in honor of Wylder, but has become a wonderful friend to us and believes in all things Wylder.  As many of you know from following this blog Phil had a serious and scary […]

It’s Fall

sun shinning over the walkers

It officially feels like fall here in the Valley.  The mornings are crispy, the afternoons sunny and the HOPE WALK 2013 was today.  I feel like the Hope Walk always kicks off the start to the fall season for me.  It was a great day full of hope with lots of walkers and cruisers.  There were many beautiful […]

20 Weeks

a wave "HI"

I am half way there … 20 weeks along in this pregnancy.  WOW, it is so hard to believe.  Steven and I cannot stop talking about little Bruiser and we just cannot wait to meet him and shower him with love.  We feel so blessed to have another little boy on the way, although it […]

Niemann Pick Awareness Month

NPDAwarenessMoPoster copy

That time of year is here, it is Niemann Pick Awareness month.  Here is a little poster of things to do this month in honor of sweet Wylder and all those babies persevering.  xoxo You can stay up to date with the many things happening in the Niemann Pick community this month with the Niemann […]

14

On Saturday I piggy backed on a Hope Kids event to hand out TONS of Wylder’s books donated by YOU!!!!  Since Wylder’s birthday in May you all have donated over 80 books to HopeKids … have I mentioned lately you are ROCK STARS?!?! Thank you, thank you for all you do.    We have made […]

http://wylderjames.com/archives/12950

10

As all of you know I love GOODNESS. I love the goodness of people in this World that we personally have come to see so much. I love how people come together for such amazing things that are so close to their hearts. When Steven and I were at the Global Gene’s Project Retreat a […]

http://wylderjames.com/archives/12988

Touched

13

Wylder has touched yet another soul, incredible.  Read the Dean Greg Crawford’s (University of Notre Dame)  blog post.  http://blogs.nd.edu/gregcrawford/2013/08/03/2916/

Newport Weekend

11

Steven and I had a remarkable time at the Global Genes Conference.  It was informative, powerful, connected and an inspirational group of people.  We are so appreciative we were able to attend.    Friday was a day packed from start to finish with information and panels of the best of the best to inform us (the […]

Global Genes Project

summit

Steven and I head out for Newport, California tomorrow.  We are going to the Global Genes Patient Advacy Summit.  On Friday we will be attending seminars and studies all day titled  From Symptom to Cure: The Journey of a Rare Disease Advocate ~ Equipping Patients to Make a Difference This is Global Genes project 2nd […]

School Year Time

IMG_7995

Thank you all so much for the beautiful well wishes for baby #2 on the way. We were absolutely inundated in the most wonderful way with love notes from so many of you overjoyed from the news. It has really been beautiful week full of love. Thank you all from the bottom of our hearts […]

Over the Moon

New Baby at 12 weeks

Steven and I are just elated to be announcing that we will be welcoming another baby into our family February 28, 2014. … And … It’s a BOY!!! That is right; I am currently 15 weeks pregnant with another little boy and just over the moon.  Baby is healthy and looks pretty cozy per his […]

We are Back

us being goofs

We are back.  We enjoyed a wonderful holiday away last weekend in Breckenridge Colorado with fam.  That makes for our 13th trip … that right, 13th get away since our Nantucket visit last December.  PS.  Have I mentioned lately I want to go back to that dreamy-ville?!  Love you Tucket!!  Any who, back on track […]

Just Cause

Wylders Trip 307

I have so much to write about lately, but I have lost my mo jo  for writing these last few weeks.  I know it will come back soon, but for now I just wanted to share some pictures of sweet Wylder James.   These are in no particular order, just a whole bunch of cuteness coming your way.  […]

PF Changs Marathon

pfchangs

Steven and I received the best and sweetest gift in the mail from the wonderful Phil and his family.  Ohhh, the magic of Phil.  This literally made us light up and was so thoughtful of him.  After speaking with Phil on the phone we learned that his daughter Abby had the most to do with […]

Shark Week

24

I can’t believe Shark week has come to an end.  You know what that means, now we can get back in the pool … Caannnyonnn Ballll!! Shark Week will never be the same without you Wylder James, but I love remembering all our chats about the fabulous-ness, scary-ness and awesome-ness of the creature. I know you “get […]

Heartbreak

quinn

Another tiny life gone too soon.  Tears have been rolling down my face since I learned about sweet Quinny this afternoon.  I am so sorry you have to endure such pain Linzer family.  We are sending all our love and prayers to your broken hearts.  Quinn is so so loved.  http://www.teamlinzer.com/   Each time Steven and […]

Information Overload

wylder on his trip to meet Dr. Wasserstein Jan 2010

This has been a tricky blog to write.  There is much I want to share about what is happening in terms of research for Niemann Pick A currently, but it is both complex to explain and early stage research that is not yet published so I have to be thoughtful about the researchers privacy.  That […]

Little Quinn

quinn

We got a message from baby Quinn’s momma and dad this morning that she has taken a turn for the worse.   Please keep this family close to your heart and in your prayers … they are so special beyond words.  Little Quinn, you are so loved sweet girl. There are no words, saying goodbye to your child […]

NNPDF Conference

9

We have made it home sweet home after the Niemann Pick Conference in Baltimore last week.  It feels good to be back and to have another “first” under our belt.  It was a beautiful weekend that encompassed an overwhelming amount of emotions.  It was so beautiful, wonderful and fabulous to meet and squeeze other families […]

Tile Project

SkyonAngelversary3

Thank you all so much for the incredible well wishes last week and messages of hope. It helped us through another difficult week. We continue to feel so blessed by the family and friends in our lives, and everyone who surround us believing in all things Wylder. This was the sky Wylder gave from our back yard […]

1 Year

hospitalbed1

Good Morning sweet baby. Thank you for waking me up this morning so I could see the sunrise Wylder.  Before I went outside I sat in bed at 5:15 and I just wept, thinking of that very moment last year when you took your last breath.  I miss you with my whole heart little one. (here […]

Painting the Clinic

paiting Warrior's Sarah (Mylee and Kloe's momma) and Robyn (TGen)

The Center for Rare Childhood Disease is moving full speed ahead!  So far they are on track to open this August, yeah!  This last week we made HUGE progress on the clinic by painting the exam rooms fun shapes and colors for the kids to enjoy.  I was thinking of Wylder every second and how […]

We met the Ingram’s

Ingrams2

We met the Ingram’s!!!  For all of you that love our littles, Wylder James … then you know and love his pal Trek Atlas.  The little guy who’s Niemann Pick A diagnosis got his mom, dad, two big brothers and him traveling the whole globe … embracing life every step of the way.  Well, this […]

TGen Clinic

TGEN

The new (and first) Clinic for Rare Childhood Disease is opening this summer right in our back yard here in Arizona.  This is yet another amazing milestone for our rare disease community as TGgen is teaming up with Dr. Narrayan to provide a place for patients and their families to turn when they feel exhausted … […]

A Quote

mtquote

  Spread love wherever you go. Let no one ever come without leaving happier. – Mother Teresa 

PANDA Event

2013-PANDA-Event-017

I wanted to introduce you all to an organization called PANDA – People Acting Now Discover Answers.  This is a Phoenix based group of women whose mission is to support discovery processes that lead to improved treatments and cures for devastating childhood diseases. PANDA raises awareness and private funding for the Steele Children’s Research Center […]

Our Trip Home

30

This post is long over do, but it seems we have been so busy I am just getting to writing about it now.  As many of you know Steven and I had our first trip back to Maui since we laid Wylder to rest last July.   We went just after Wylder’s 4th birthday for Uncle […]

Weekend Race

PhilKelsey1

There were a few turn of events at this weekend’s 100-mile Ultra marathon. As we all know, life has a way of throwing challenges at us for many reasons, some of which we do not initially understand. A many of you have already heard, unfortunately Phil had an injury during the race. He is okay […]

Thank YOU

teamwylder

Thank YOU, thank YOU, thank YOU!! We cannot thank you all enough (AGAIN) for the support you have shown Phil and Kelsey and therefore Wylder’s Research Project this week. Kelsey and Phil begin their 100 mile run tomorrow night.  I really cannot even wrap my head around that kind of run and the stamina, endurance, […]

Moments that take your breath away

philandkelsey

These days it seems like every time I turn around I am being reminded of the ripple effect of little Wylder James.  They are moments in my life that literally take my breath away, and continually remind me of the goodness of people in this World.  We were speaking with Phil the other day about […]

more lessons from a warrior

IMG_8111

Do you remember being 18? Preparing to graduate from high school feeling like the world is your oyster, believing you are prepared for anything that life will throw your way. It is a time I remember with such clarity in my life and I often think and reflect back, which makes me always think of […]

Arizona Capitol Times

AZCapitolTimes1

A wonderful article in this months Arizona Capitol Times about “TGen Translating Medicine into Patient Care”.  Our sweet Wylder is featured in the story as well as many other little darlings with stories of HOPE.  (i apologize, i know this is a bit hard to read …. but this is the best way I could […]

Little Wish

littlewish5

I cannot thank you all enough for the support you have shown us with Wylder’s new book “Little Wish”.  We continue to feel so blessed by the support sytem Wylder has given us.  I have received such an outpouring of support and love notes about how your kids are enjoying the book … the pictures […]

Sawyer

sawyerwylder2

On Wylder’s birthday this year our dear friends Travis and Victoria called us at home to say there second little boy came in to this World (two days past his due date).  Not only would we learn that their little one would share a birthday with our sweetest little boy, but they wanted to find out if he could in […]

NORD Speech

NORD

An amazing speech Phil gave at NORD’s 30th Anniversary gala … just Beautiful.  Enjoy xoxo http://runningforrarediseases.org/2013/05/16/2013-nord-gala/  

Happy Birthday Wylder

16

Happy Birthday to you, Happy Birthday to you, Happy Birthday to Wylder, Happy Birthday to you. Wylder, we celebrated you today.  We had a most dishes birthday cake just like the one you scarfed down at your first birthday, it was so “yum yum”, and I just know why you loved it so much.  We let 38 of the most colorful […]

Little Wish

littlewish

It’s almost birthday time.   This Wednesday is Wylder’s 4th Birthday.  We miss him so much, and are proud to honor him this week by releasing his second children’s book titled Little Wish.  This is a hard back 30 page book that teaches children that “everyday holds a possibility of a miracle …. just do a little wishful thinking.”   Little Wish […]

Mothers Day 2013

7

Happy mother’s day Wylder Nation.  Thank you all for the amazing well wishes, notes and love you sent my way today.  They helped my through whay at times felt like a very impossibly day.  As you can imagine it has been a day filled with ups and downs, but mostly one celebrating the fact that I am […]

Run to Live

April 15, 2013 - Genzyme Marathon - 181

Meet Shane James. I wanted to share some more amazing-ness about the Boston Marathon Running for Rare Disease team and there patient partners we got to meet last month. During our time in Boston there is not one person we met that was not aw-inspiring. Amongst many, I had the pleasure of meeting a man […]

Steven’s Trip

flowers

I promised I would write about Steven’s trip to Maui.  I have been excited to share with you all the fact the Steven got an all expense paid trip to Maui because of his Cousin Brett!  WOW.  Of course that was an opportinuty he could not pass up, and so he went for it.  THANK YOU COUSIN!!!  This family that […]

WN Rocks!!

NORD-logo

Wylder Nation … YOU rock!!  We more than doubled our fundraising goal for Phil who ran this years Boston Marathon in honor of Wylder … raising over $10,000 for NORD.  This is on top of the silent auction Phil put online which brought in another $7,500 WOW!  When I try to explain to people the support […]

Goodnight Keiki

1

After what has already felt like an impossible last week  with all of the happenings and the news in our Nation … it is with a heavy heart that I share with you that two more children battling Niemann Pick A have received there Angel wings.  Lily Anna Beaupre, cherished daughter of Yvon Beaupre and Eliza […]

Memories

April 15, 2013 - Genzyme Marathon - 003-1

I want to share with you all the joy that came out of this last weekend at the Boston Marathon.  This has been a difficult blog to put together, but I think it important that we all hold on to the goodness of the day. Let’s start with the day before we left for Boston.  […]

Boston Tragedy

A  note to the blog to let you know that all the team runners on the Running for Rare Disease Team and there patient families are safe on this Tuesday morning.  Many of the  team members were safely past the finished area at the time of the blast, while others finished their runs just short of the […]

Marathon Monday

We are just hours away from marathon Monday and very, very excited.  I am in Boston with my gal pal Alexa ready to cheer on Phil and the running for Rare Disease team on the sidelines.  The energy is unbelievable and the emotions are high!!  Phil and his family are the essence of hope and […]

Keep them Coming

tessa

The pictures are already starting to come in!! Thank you, thank you, thank you little Warrior’s.  Thank you for showing your love!    Learn more about this “Warrior Paint Campaign” to raise Awareness about Niemann Pick A and support Genzyme’s Running for Rare Disease Team HERE.  Goal is 1,000 pictures by Monday so please keep them coming!   Pictures coming from […]

Warrior Paint Campaign

75 (7)

One week from today is Marathon Monday!!  Phil Madera will be running in honor of Wylder at the Boston Marathon next Monday April 15th with the Genzyme Running for Rare Disease Team!  This is a BIG deal.  This is the GOODNESS in the World that Wylder taught us is out there everyday.  And this is continuing to help bring our Rare […]

One Word Essays

Christmas 2010

We received an emailed titled “One Word Essays” from a couple of different people this last month.  It was a GREAT email with single words attached to single pictures that told an amazing story.  I decided I would take these same words and put together Wylder’s version with mostly unseen photos..  LOVE. DETERMINATION                HOPE CONTEMPLATION TRUE […]

13 Days and Counting

runningteam

13 days Days, 14 hours and 36 minutes until the 2013 Boston Marathon … but who is counting??!!  We still find ourselves having to pinch our arms that someone as amazing as Phil Maderia, who started “Running for Rare Disease” 6 years ago … is running on behalf of our Wylder this year.  WOW.  People are good.  God is […]

Happy Easter WN

IMG_4680

Happy Easter Wylder Nation. Easter 2010 Easter 2o11 Easter 2012  Sending you hugs and kisses in Heaven littlest one.  You are loved!!  

Road Trip

dolphin!!

Our California 4-day weekend was beyond wonderful and was just the get away Steven and I needed.  It was so perfect to see and squeeze family and breath in that salt water air.  We hit the road in our rig Thursday afternoon around 3:00pm just after the MASK Luncheon.  That luncheon was beautiful by the way, […]

8 months :(

photo 3

Steven and I have been staying very very busy.  That is always a good thing as it keeps the mind and body healthy and clear.  That being said we are still very much grieving parents and when we get a even a moment of quiet our emotions can be very overwhelming.  It is such a juxtaposition of feelings […]

Happy St. Patty’s Day

saintpattys4

An Irish Blessing from our home to yours this saint patrick’s day; MAY YOU ALWAYS BE BLESSED WITH WALLS FOR THE WIND. A ROOF FOR THE RAIN. A WARM CUP OF TEA BY THE FIRE. LAUGHTER TO CHEER YOU. THOSE YOU LOVE NEAR YOU. AND ALL THAT YOUR HEART MAY DESIRE.  Wylder James, you are our […]

Coming Soon

webpagecover

Sorry, we have not been writing much lately Wylder Nation.  We have many things happening on the for front for our sweet Wylder James and it has been keeping us moving and shaking.  That being said we have created an event calendar for WN that we have added to the webpage.  We are excited about […]

The Greatest

IMG_5217

The greatest series of photos of all times …. Wylder James Laffoon’s first birthday, post his so fresh and so clean bath time. Hair-do fun and giggle time! NEW hair-do and giggle time round two!  We love and miss you with our whole heart littles. We love that we have the most precious and best […]

MASK Unity Award Lunchoen

41 (11)

I am so honored to find out from MASK that I am a finalist for the MASK unity award thanks to all of your voting Wylder Nation!!  Here is a list of the amazing women finalist that I am honored to be amonst; Tami Butcher Author of “Bonus Mom” Stephanie Cole Sweet Pea Project Jennifer Cresswell […]

Trending

who wouldn't want to have a cool name like this DUDE!

A girlfriend of mine sent this picture to me this morning! The cover of Parent magazine sharing trending baby names.  What?!!  I definately never thought we would see the day Wilder was on it.  Kind cool… You trend setter you Wylder!!  We think the ‘y’ makes the name even cooler and more extra special … just like you are Wylder James.  We love […]

WN Rare Disease Day 2013

pinquote

 Wylder Nation was ready for the day!!  Thank you all for joining the movement yesterday and raising so much awareness for our Niemann Pick and Rare Disease families.  The pictures that were all over face book, twitter, instagram and that filled our inbox were just incredible … it really did feel like so many people […]

Rare Disease Day

raredayposterFINAL

Tomorrow, Thurs Feb 28th, is Rare Disease Day and we are getting ready to visit Phoenix Children’s hospital and Scottsdale Shae hospital to spread some love, WARRIOR STYLE!  Remember to wear your jeans tomorrow because “hope is in our Genes”, and your spicy Wylder Nation Tee’s.    Let’s raise some awareness for our Warrior and the approximately […]

Heaven’s Got A Plan For You

55 (4)

A song for you sweet Wylder from your cousins Madi, Caityln, Stephen and Tyler.  They said this song, “Don’t You Worry Child”, makes them think of you every time it is on.  Sweet dreams in Heaven little one, you are so loved.  xoxo Click on the photo below to hear the song … http://www.youtube.com/watch?v=1y6smkh6c-0  

Da Barefoot Warrior

Wylder in Jan 2010

A beautiful quote from Ernest “da barefoot warrior” and  Lisa, our Ohana in Maui.  Aloha. In some moments of your life, you may find your breath being taken away. But with each and every breath you take, you may find your life slip’n away. Take each and every moment of your life, Take each and every […]

RDLA

hope2

Upcoming events/happenings for Rare Disease Day coming up.  Join Annual Advocacy Events in Washington DC Join Global Genes and Rare Disease Legislative Advocates (RDLA) for the following events: Cocktail reception and documentary screening of film Here.Us.Now – Monday, February 25 Legislative Conference – Tuesday, February 26 Rare Disease Lobby Day and training breakfast – Wednesday, February 27 NIH – Rare […]

National Rare Disease Day is Coming

rareday

National Rare Disease day is coming up next Thursday, February 28.  That’s us Wylder Nation!!!  It is an internationally recognized initiative coordinated by patient associations such as NORD and Global Genes Project meant to raise awareness about the 6,000 rare diseases that affect more than 60 million people (including Niemann Pick A).  World Rare Disease Day is an […]

Happy Valentine’s Day

snuggles with the smooching monkey

Happy Valentine’s Day from our little Valentine!! 2010 so cute!!! i love all my treats daddy! 2011 I love red! Love!! A valentine’s snuggle 2012 snuggles with the smooching monkeys More Valentine’s Treats  Sending lots of love from our home to yours this Valentine’s Day.  We love you Wylder!!! xoxo

a love story

valentine's day 2012

For those of you that do not know why or how this blog started for our Wylder (in Jan 2011) … here is a very brief explanation.  It was quite simply a way to keep close family and friends up to date on our littlest Warrior.  It helped me immensely to start to write/journal as […]

Feeling of Aloha

sail

Steven and I are feeling the spirit of Aloha coming all the way from Maui with this beautiful song Ernest recorded just yesterday.  He sang these sweet words on the boat as we laid our Wylder to rest last summer.  This music, soul, and song means so much to us … it fills our hearts […]

MASK Unity Award

shannon laffoon23

Thank you so much to everyone who voted these last few months for the MASK Unity Award.  We learned just a couple of days ago that we made the top 15, wew hew hew!!!  It turns out you all can continue to vote for the next few weeks HERE (once a day) … until they […]

Keeping My Heart Open

IMG_7336

I am kinda-sorta going back to work (gulp, double gulp). For those of you that do not know, I was an interior designer before I had my sweet Wylder. I LOVED my job and was lucky enough to even have my own business … and the best clients in the World for that matter.  People […]

Boston Marathon

phil

Introducing the GREAT and wonderful Phil Maderia who is running this years Boston Marathon on April 15th for our Warrior Wylder James. Team Genzyme  is Running for Rare Disease for the 6th year in a row and with 15 patient partners.  They are all literally raising awarness with every stride they take for diseases that […]

A Whirl of a Weekend

rrosen

Steven and I were in Colorado over the weekend.  It was a quick trip … but turned out to be a much needed trip.  We were given an amazing and beautiful gift by some DEAR friends of ours a couple of months ago.  We were given an appointment/session with a professional Meduim named Rebecca Rosen for January 28th.  We […]

The’re Back

wishingtree5

Do you all remember the blog I posted months back about what I had in store for Wylder’s wishing tree notes?  I was colleaguing them into a book form called Smash Booking.  They were all in place in the book and looking beautiful, when all of a sudden I was awoken in the middle of the […]

Niemann Pick Foundation

bankiewicz

The Niemann Pick Foundation emailed and said we are officially allowed to share the details on the reseach happening on NP Type A in California.  Edward H. Schuchman Research Fellowship I.  Project Title: “AAV9-mediated human acid sphingomyelinase expression in nonhuman primate brain: Preclinical development of gene therapy for Niemann-Pick disease type A” Principal Investigator: Lluis […]

6 months un-anniversary

oceanquote

 Sometime when we are without words, they manage to find us.  While online searching for nothing, I found something … this beautiful picture with these beautiful words, “Heaven is an Ocean”.  We love and miss you Wylder James … there are tears on our pillows, but only love in our hearts.      

Lots of WN Updates … Lots!

HOPE baby!!

Hi Wylder Nation!!  I feel like I haven’t blogged, I mean really written to you all in a while.  Well, I am making up for it today … there are so many amazing things to share with you.  Where to start … we have been so busy.  We have been working to set up our plan of […]

Thank You TGEN

tgen

TGen wrote a beautiful article about our sweetest little Wylder James.  Thank you TGen for continuing to raise awareness for childhood diseases and for continuing to strive to make a difference …  unity is HOPE.  We are so glad to be joining forces with you all so that “one child’s life will continue to change […]

MASK “Moms Making a Difference” Unity Award

mask

This year has been off to a very busy start.  Getting settled back in at home has been both wonderful and hard. Trying to accommodate for so many wishes/plans for 2013 with Wylder Nation, more books, my own job plans is overwhelming and exciting.  Needless to say, we have been sleeping well this last week, […]

wildhearts

Thank you all for your Random Acts of Kindness for Wylder this week and all the beautiful messages you sent our way.   It has definitely been a slippery week … but with your help we are on the up swing.  We thank and love you Wylder Nation.  xoxo  

http://wylderjames.com/archives/10789

RAK Day TODAY (Jan 7th)

Wylders Trip 457

It is so hard to believe this day has come again … it is RAK day.  Last year … last January 7th I decided to change Wylder “Diagnosis Day”  to a day where we all do a random act of kindness in his honor instead.  It really helps to take some of the fear and anxiety away […]

A Must Read

trek

I am not much of an avid reader.  In the past I often just find myself dozing off when I pick up a book to read, never really getting “into it” … but not this time, not this read.  On Wednesday morning I refused to get myself out of bed until I finished the Ingram’s novel […]

2012 Photos

june

Last year Steven and I did the top 10 events  of 2011 for our new years blog, but that just doesn’t feel right for 2012.  So we decided to choose the MOST SNUGLY pictures (each month) of Wylder in 2012 as we step into 2013.  Thinking of Wylder looking so comfy and smelling so fresh and […]

HOPE for 2013 Already

Our first day into the new year is already showing signs of progress for Rare Disease!!!!   YEAH! Gene vaccine injected into the brain helps kids with Canavan Disease A team led by a New Jersey researcher has been able to slow the course of a rare childhood brain disease by injecting patients with corrective genes, according […]

Happy New Year

pool9

Steven and I are officially home sweet home, and it feels great.  Walking through our doors reminded me so much of coming home after a long hospital stay with Wylder.  I was filled with emotions like gratefulness, overwhelmed with to-do’s, and reality always strikes after a long time away from home.  But the bottom line is there […]

Christmas didn’t suck, Christmas was Christmas

white christmas

We spent Christmas in Colorado this year.  On Saturday evening we went to a Christmas party with family and I am not going to lie, it was really hard.  I tried with all my might to bale at the last minute … but I am so glad I didn’t.  Things like this will always be difficult, but I […]

Merry Christmas

Christmas1

Merry Christmas Wylder Nation.  Sending lots of love from our home to yours.   Remember Always …Wylder James   A beautiful Christmas song for you all to enjoy today from us.   http://www.youtube.com/watch?v=qA6rB6RaccY

Santa

31

Santa Claus came to town for HOPE Kids, and it was an amazing turn out.  Fourty-two kids meet Mr. and Mrs. Claus and and snacked on some delicious cookies and milk.  HUGE thank you to Lons for letting us use their beautiful gardens and  Pouge Photography for taking each child’s photo with Santa.  It was a really special afternoon.  Every family got Wylder’s […]

Hoilday Gift Ideas

Christmas4

It is hard to believe we are only one week from Christmas.  Hasn’t 2012 brought us all back and reminded us the true meaning of Christmas?  Materialistic things have no meaning to so many of us at this point, it is certainly NOT what matters.  That being said, Santa will still fill deserving stockings with sweet treats and we […]

Manifesting A Happy Life

IMG_5846

On my plane ride out to Nantucket I started to read a book titled SPIRITED by Rebecca Rosen, and I quickly finished it just a few days into my stay.  At this point it my life it was a must read, and although I try to take many things with a grain of salt … this book […]

#PrayForNewton

broken heart

Our hearts are completely broken for the families and friends affected by yesterday’s tragic shooting in Connecticut.  We are so sorry, so so sorry.  Wylder Nation …. you know what to  do.   I read this article on FB and thought it was worth sharing … for when there really are no words, there are still some that are […]

Survival Kit

cottage1

Our amazing, wonderful, kind and wise grief therapist made a list of things she thought I should consider taking on my long get away.  A short of  homesick “survival kit”, if you will. Brilliant, she is brilliant.!!!  I am so glad that I have little trinkets from my home and day to day life here in […]

Beachy Bliss

beach3

I totally confused you all yesterday with the blog (tee hee),  sorry about that.  Yes, I am still on Nantucket and will be here until the 20th (home just in time for the Santa event).  I am just doing a lot of the planning and organizing from a far :).  Nantucket continues to be both blissful and […]

Santa Claus Is Coming to Town

santaclausiscomintotownINVITE

The event is planned!  Yep, Santa Claus is coming to town for HOPE KIDS in Valley.  Just a few days before Christmas on December 21st we are inviting approximately 20 Hope Kids’ families to Lons at the Hermosa Garden for a meet and greet with Kris Kringle.  Every child coming will get some one on […]

Nantucket Charm is so Healing

111

Since Wylder passed in July I have come to notice more details in my surroundings than ever before.  Sunsets, mountain tops, flowering cactus all seem so much more beautiful than ever.  Sometimes I even question if they have always looked this way?  I am beginning to appreciate that life is in the details, often right […]

I Don’t Understand French, I’m a Christmas Tree :)

santa

The Christmas Noel on Nantucket.  What we have been up too.  Our first 24hours on Nantucket was just about exploring and getting our bearings.  Stopping in at the “stop and shop” to stock up on groceries, checking out the shops and cruising through town.   It is amazing to me how I have only been here […]

Christmas Stroll

stroll7

A picture is certainly worth a thousand words.  The Nantucket Christmas Stroll was amazing … you can really feel the magic of Christmas here on the island!  We have a lot more photos coming … this town is so charming we cannot help but snap snap snap.  We made a little Grinch finger puppet tree […]

We Made It

morning view

We made it!!  Steven and I are at our new temporary home away from home on the island of Nantucket.  The air is crispy and it feels like Christmas is right around the corner everywhere we go.  We received some amazing signs from Wylder before left (which I will share at a later date) … assuring […]

Grateful for TGen

IMG_4729

We are GRATEFUL for TGen (the Translational  Research Institute).   I have shared a bit about this organization with you all over the past 6 weeks or so, but I am over the moon to tell you that TGen is sharing Wylder’s book “Warrior Baby” with all of their current Center for Rare Childhood Disorderse Patients this Holiday.  Fourty books are going to 40 TGen Kids … […]

Shark Diver

wilder

I thought it would be nice to share something very fun with you this black Friday/post holiday weekend.  For those of you that did not read the past post about where we first heard the name Wylder/Wilder you may need to do a bit of catching up.  You can read the old post here  http://wylderjames.com/archives/9102 After writing […]

Preparing for Firsts

tree6

Christmas Decor.  To decorate or not to decorate … that was the question.  I know that it sounds like an incredibly silly question, it is only decorations … but it was a decision I vacillate about for days on end.  With the Elephant of grief sitting on my body every day, would I even be able to […]

Iron WO-man

there she goes ...

Steven and I went to our first Iron Man event on Sunday.  No, no we did not participate … ha ha, I just had a giggle evening thinking about that one.  We were going to support a very special friend, that has been supporting us for years now  … MAGIC Beth.  For those of you that have followed Wylder’s blog […]

Joy of Jacob

jake

We are so sad to have to share with you that another Niemann Pick Angel baby got his wings on Thursday. Please read his mom’s beautiful words on their blog below.   Jake is one loved little man with two amazing parents.  We are just so sorry for your loss Josh and Sarah.  Wylder Nation please send […]

Magic

here they go ...

Ollie here WN family … and boy oh boy do I have AMAZING news to report!!!  The Believe in the Magic of Christmas Challenge ends today and you all pulled together and raised $1,215.  WOW oh WOW!!  Shannon, Steven, Wylder and Santa are all so very proud of all of you and grateful for giving to sick kiddos […]

Oh the Places You’ll Go

PANDA

Congratulations! Today is your day. You’re off to Great Places! You’re off and away! You have brain in your head. you have feet in your shoes you can steer yourself any direction you choose.  you’re on your own.  And you know what you know. And YOU are the guy who will decide where to go.    I […]

Strength of An Egg

egg

I got this note/poem from a friend of mine, and I thought it was too beautiful not to share.  I think many of you mothers reading this will relate. The Strength of an Egg Parents of terminally ill children, or really any serious condition, are often referred to or viewed as having strength “like a rock.” […]

So Much Goodness … make that Greatness

temple

Thank you Mrs. Abbee Laverty and your second grade class at Imagine Bell Canyon, for letting me share Wylder’s “Warrior Baby” book with you today.  It was magical for me to see you all engaging in the book and meeting Wylder through his story book.  It was the most special way to start the day.    And thanks […]

Fight for Life

2

Ollie was literally flipping out over the amount of books that have been donated to children currently persevering against Niemann Pick Disease (type A, B and C).  Just 4 days in the “Believe in the Magic of Giving” Challenge … already nearly 40 books have been donated!! WOW.  There are currently 55 kids with Niemann Pick […]

Blown Away

ava'sschool3

An update from Ollie the Elf … day ONE of the ‘Believe in the Magic of Christmas’ Challenge was AMAZING!!  To say it was a successful day is such an understatement.  I woke up this morning to Ollie sitting on all of the books donated to Niemann Pick kiddos yesterday.  WOW oh WOW, can you even […]

WN Kids Christmas Challenge

christmas1

As I mentioned to you all, it was so heartwarming to see Wylder’s book in the hands of so many HOPE KIDS battling terminal illnesses a few weekends back.  It really touched me and made me feel inspired once again.  So as I was off to dreamland one night thinking of my Wylder and all […]

Happy Halloween

IMG_6535

Littlest Wylder James, we miss you … we do.  Our first holiday without you and it is impossibly hard.  We are so grateful we shared three amazing spooktacular halloween’s with you and have so many memories to cherish.  You are loved. Halloween 2009 Halloween 2010 Halloween 2011 Happy Halloween … hope it is filled with lots of […]

Warrior

pinterestquote4

Beautiful and simple words to live by today.  And a beautiful song we found that makes us think of our Warrior.  Hope you enjoy. http://www.youtube.com/watch?v=0lEMYc_fSmo  Make it a good day.  xoxo

Do you believe in Magic.

As you all know Steven and I were invited to an TGen event on Wednesday night.  I will be honest, I did not really know what to expect going into the evening … but what I didn’t expect was to leave their with such a tremendous amount of hope and love in my heart.  It was an […]

Reactions

hope

These last few days has been filled with ups and downs around here.  That seems to be the new normal for now.  Steven and I were both feeling pretty down and sluggish and even as we tried to lift our spirits by hiking, strolling, and running useless errands … we were both feeling pretty empty.  We […]

Hope Walk

hopewalk

Please join us this Sunday October 21st at 9:00 am the Plaza on Market Street at DC Ranch for the annual Hope Kids Walk. We will have a Wylder Nation “Warrior Baby” stand their where we will be selling  Wylder’s books to lots and lots of little Hope Kid Warrior’s.  Here is the scoop on the […]

Wishing Tree Notes

smashbook

As many of you know I have been trying to decide how to preserve and showcase all of the beautiful wishing tree notes you all sent Wylder over the past year.  For those of you that do know the history of the wishing tree …. here is what it is and how it came about.  On […]

Newsweek

newsweek

“Warrior Baby’s” first book signing with HOPE KIDS on Saturday was very successful … and fun!  We met more Hope Kids families, lots of special Warrior Babies and our  friends and family came out by the car loads to show there support.  We sold 17 books that day and shared Wylder, his lessons and journey with […]

tucket

nantucket island

I am going to Nantucket.  WOW, just to say it … just to type it … feels so amazing.  Anyone who knows me in just the slightest of ways knows this is a place very dear to my heart.  I have only been there one time (for a vacation after college with my mom) .. […]

miss maddie

maddie1

An update on sweet Maddie dog.  So far Maddie has been feeling pretty good and doing okay without her sweetest baby by her side daily.   I know some of you will think I have officially lost it  … but I think she is doing so well, because dogs have a sixth sense that we do not have.  […]

Warrior Baby Book

first ever book signing ... tee hee.  butterflies in my tummy already.

Well, a lot has been happening here in the hacienda.  I have been working hard on putting together a website for Wylder’s book and my future shop to give concept for more children’s books to come.  It has been both a lot of work and a lot of fun.  I have reached out to some organizations, […]

Niemann Pick Awareness Month

pumpkin2

October is here and it is officailly Niemann Pick awareness month.  Ironic that today the PACIFIC WHALE FOUNDATION announced their First Maui Humpback Whale Sighting of the season??!!   I think not … hi Wylder!!! We miss you little one. Please help raise awareness for a disease that does not get enough by sharing our Warrior’s story with […]

Wylder Nation Foundation?!?!

sweetest grin ever!  march 2011

Steven and I had a meeting this week to learn about 501C3 Non-Profit Organization.  Although it is quite complicated and a bit overwhelming we definitely got the scoop from the best of the best … from new friend and nicest lawyer ever met Luke Reynoso.  Steven and I are now getting our ducks in a row to move forward with Wylder […]

Beautiful

necklace

When we were in Hawaii, Steven got me a very special gift … it is a mommy turtle and a baby turtle necklace and it is both absolutely beautiful and meaningful.  The turtle shell on the necklace is Koa wood … Koa is the largest endemic tree in Hawaii and exists naturally nowhere else in the world. It was […]

Taking Care

blessthisnest1

How Steven and I are “taking care” of ourselves and each other these days.  When you go through times of such stress in your life, it is important to put yourself first and take care of one another.  Lately it seems extra important so we have been focusing quite a bit on this.  Although very time […]

A Good Laugh

pinquote

Quote for today (9.20.2012); Today marks 2 months … needed something to make me laugh! This did it. Might be the best video of all times … love the seriousness combined with belly laugh, and of course the rock star hair do. Classic! Click on the image below to watch the video;  

Marshmellow Brain

whaletheme

As I begin to go through the mourning process these last 7 weeks, I have come to realize there is not enough information or truth out there about the reality of mourning.  Although there are stages of grief, and everyone’s mourns very differently …. what is not explain is how deeply saddened you really are (your whole […]

Flying High

disneyquote

I was downloading and organizing some photos and found these para-sailing pictures from Maui.  On our second to last day on the island we took our niece and nephew … flying high just above where we had let Wylder’s ashes go just a few days earlier.  The last time Steven and I parasailed was together […]

An Un-Told Story

WylderThanksgiving

I wanted to share a story with all of you, that I had not shared yet. It is both a sad and heartwarming story in the same breath.  OUR FIRST MEAL OUT. Three’s day’s after Wylder passed away Steven and I had our first meal out in public.  It was not a date, or a […]

I’m on a Mission

Steven and I learned of three babies diagnosed with Niemann Pick A since Wylder’s memorial.  I sobbed!  One little one in Russia and two here in the US, all girls.  I took my anger and sorrow and tried my darn-dest to shine a positive light …. oh my, what happened next was borderline catastrophe!  I had dreams …. I […]

Wylder’s Research Fund

IMG_0058

As I watch the movie the Lorax last night (which rocks by the way), the main quote from the movie made me think of all of you. “Unless someone like you care a whole awful lot, nothing is going to get better it’s not”. Wylder’s research fund raffle was a BIG success!!  We raised $3,000 […]

Lessons From A Warrior

WylderPoem

The September issue of Images AZ Magazine is out and our Warrior’s lessons are proudly displayed in an article.  Please check it out entire article at www.imagesaz.com Amanda Larson’s ‘Lessons from a Warrior’ poem is beautifully displayed with pictures of our littlest.  Amanda read this beautiful poem at Wylder’s Celebration last weekend … and truly, every words resonates so deep […]

A WHALE of a Time

whale2

I warned you all there would be some more amazing information/stuff coming via blogs.  For those of you that were not at Wylder’s Celebration on Saturday … it is time for you to hear why it was a WHALE of a time. Buckle your seat belts … this is incredible … MEET WYLDER … the whale! That […]

Warrior Baby Book

warriorbaby2

Wylder’s baby book is filled with simple words and BIG reminders … and is officially available to buy TODAY.  I am over the moon!  I literally have to keep pinching myself, that it is here … just as I had dreamed.   I am working on getting it on WylderJames.com … but it is available now at amazon for $12.00. As most […]

Remembering A Warrior

fireworks

What a night!  Saturday night was absolutely an evening to remember and a perfect celebration for our Warrior, Wylder James.  We were honored to have as many people attend that did (we estimate we had about 175 people).  The night was filled with both tears and laughter … and was a room busting at the seams […]

Wylder’s Research Fund

Just a little info to fill you in on what Wylder’s Research Fund is.  We are very proud … as our Warrior continues to help others.   Wylder research fund is for never been done before  research for Niemann Pick Type A disease.  We had several different tissue samples of most of Wylder’s major organs along […]

Create the Life you Want

IMG_8165

I cannot believe it has been 1 month today without our Wylder.  I have been a bit restless and feeling overwhelmed … but received this article from my sister in law.  It actually really helped me and I even did the exercises (tee hee).  Dream big or go home!!   When you know what you want, […]

Celebrate

blogprogram

We  are really looking forward to celebrating Wylder with many of you next weekend.  We know it is going ot be a beautiful night filled with  both laughter and tears.  Being surrounded by so many people that supported our Warrior these last three years is what we are looking forward to the most.  I have gotten […]

Niemann Pick Conference

nashville

The National Niemann Pick Disease foundation’s 20th annual family support and medical conference is in Nashville Tennessee … and starts tonight.  Steven and I very much wanted to attend, but with all our happenings and Wylder’s celebration coming up on the 25th … we just could not make the trip.  It is a conference loaded with information and […]

Shark Week

sharkweek

Shark week has always been a big deal in our home … let me be honest … I am, and always have been complete OBSESSED with sharks. “Hooper drives the boat Chief”.   I don’t know if it is fear alone or what gets me about them most …. maybe it is just their intrinsic nature and SUPER creepiness […]

Wailea

IMG_3802

As I mentioned in the last blog, our last few hours on Maui were spent on the Wailea side.  We walked all around the beautiful grounds and then found a small private beach area where we could rinse out Wylder’s Urn together.  It was nice to have the quiet and be by ourselves for this. […]

Sweet Home

MauiLastDay4

We thoroughly enjoyed our last day in Maui and took it all in …. but I have to tell you it was so wonderful to get home sweet home.  We have ALWAYS felt that way. We took a bit of video of the ocean right before we left Kaanapali and let one single white plumeria out […]

Final Day

wylderjames-66

Today is our last day in Maui.  Our emotions are all over the place … it will be incredibly hard to leave and incredibly wonderful to get home in the same breath.  As we pack up our room to prepare to head down to see Ernest sing just one last time this trip, and then drive […]

Beautiful Molokai

IMG_3722

We saw the ENTIRE beautiful island of Moloka’i in about 24 hours … WOW~  It was a once in a lifetime opportunity to travel the island with our Puaa Ohana (family).  We were welcomed and loved on by so many auntie’s and uncles, explored Molokai’s beauty and ate home made delishes food.  The pictures say it all. We got to […]

Lullaby

wylderjames-170

A dedication from Ernest … “to our Warrior Wylder James”.  Twinkle Twinkle … well, I have no words.  Please listen and enjoy. (click on the picture below to listen) http://www.youtube.com/watch?v=dtl6maCFP_w We just know you are all going to be as moved by Ernest’s music as we are, if you don’t know of it already.  Please buy his CD at http://dabarefootwarrior.com/catalog.htm  […]

Moments

18

So far on this trip there are been a plethora of beautiful moments and incredibly hard moments …. mostly beautiful moments.  Some of my favorite beautiful moments have been just swimming in the ocean with my niece and nephew and popping up to see a flower floating near by.  I cannot help to think they […]

Ingram Style

Baby Trek Atlas’s family celebrated Wylder in the most special of ways … by giving to others.  Steven and I read this blog the Saturday morning … the morning we were taking Wylder James to sea.  What a way to start our day.  We cried to many tear … what a beautiful and most special […]