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.  My mom ended up getting the flu and was unable to travel with me.  Although she was saddened and disappointed beyond belief, she not only insisted that I still go to be a part of this most amazing weekend … she also insisted I see if a friend was able to go with me.  I made a call to my gal pal Alexa, and being the most wonderful friend that she, she was not only in … she was excited to be a part of this journey with me (even though I was literally just giving her a few hours notice from when would be departing).

I feel like I should say a little side note here, Steven was not able to make it because he is in Maui for a few days.  I will blog on this soon I promise … just feel like this blog going to be pretty lengthy already. :)

We arrived in Boston and were greeted by the most friendly face … Phil!!!  He pulled up at the airport with his Wylder Nation sign hanging in the window and we felt like we were meeting a friend we had known for years.  It was a bond.  Meeting the rest of his family was amazing and they welcomed us into there city with open arms and showed us all around.  Boston is a BEAUTIFUL city and the energy that was there over the weekend with all of the runners walking about was unbelievable.

Saturday night we had a beautiful dinner at Genzyme and it was the first time I got to hug and squeeze people that we have been talking to over the phone for years.  It was magical to me.  It was an emotional evening where we got to meet all the runners and there patient partner families.  We were in a room full of patient advocates for rare disease and family supporters that thrive to make a difference for there children.  We also meet one of the runners Kai who went to schools with little Quin ‘s (NPA) mom. SMALL WORLD!  After dinner we got to tour genzyme and it is quite a facility.  They make magic happen there everyday and produce medicine that save children’s lives.  It is easy for many of them to go to work each day as you can imagine.

Bright and shinny Monday morning we were pumped!!   With our signs in hand and war-painted faces … Phil picked us up and we headed to the team breakfast.  They energy was HIGH and the runners were ready.  All the runners wore there WN stickers over there hearts and there was such a since of promise, empowerment and community.  We hugged our Rare Team Runners good bye and they were off … ready to run for there Rare Disease partners.

The next time we met up with the Team was just after the half way mile marker.  What a euphoric feeling being there.  Cheering people on, jumping up and down, watching people pass as they were doing it … running for thing BIGGER than them and reaching goals.  As the fist wheelchair “runner” flew by there was not a dry eye … just more of that feel good feeling that you can do ANYTHING you put your mind too.  The first woman runner to pass us by looked like a gazelle … she was made for running. We cheered as the father son Holt team ( passed by us and we all stood so proud and so uplifted for many.  Alexa and I were on the sidelines painting faces, thinking of Wylder, thinking of Phil and all the goodness of this day.  We cheered at clapped on the first timers with their names printed across there jerseys so proud of what there were accomplishing.  We bonded with many of the other families and Genzyme staffers and we all soaked in the energy and goodness of this day on our sidelines.

As the Running for Rare Disease team members were coming by we rang cow bells, signs, and there was so much love on this sunny afternoon.  The hugs and love that piled as the running team came through to be greeted by there patient partners with there big smiles and hugs was a greater feeling than I could ever put into words.  They were doing it … running for Rare Disease … running to make a difference.  As the team ran by … many of them would look up for Alexa and I and then tap there WN sticker and point at us.  It was magical.

Phil was running up to us with his arms pumping up above his heads and his GREAT pal Shane by his side, both in there Warrior paint grinning war to ear.  He was running, running for Wylder.  There were no dry eyes in that moment, just gratitude and HOPE.  Phil was running on this very special morning for the most important person in my life and it was special.  Just incredible.  And to top it off Phil chose to run even with pneumonia.  Yes, pneumonia.  But when he woke up feeling great and knowing Wylder would be on his shoulders he was up for the challenge.

A few hours later as Phil and Shane tackled “heartbreak hill” with ease in there step and the wind at there back … they were thinking and feeling Wylder with every step.  High five-ing strangers along the way your songs for Wylder were in there ears and Phil felt no signs of pneumonia, only love, strength and proud-ness for a team he created 6 years ago to do just what they were doing.  Theses are the memories of this day I will hold in my heart forever.  They are forever implanted in my memory.

As Alexa and I were with Phil’s family heading to meet him at the family area around 2pm … then came the scary. The unthinkable.  What is remarkable to me and  that ceases to amazing me at times of terror and tragedy is peoples willingness to run TOWARDS to help.  There were some patient partners and genzyme staffers less than 200 feel from the explosions, but by the Grace of God everyone in our group was okay.  We were just a few blocks away as Alexa and I turned down two tickets to sit in that area just moments earlier.  We decided to stay with our new family The Maderia’s and we know now that is because was Wylder looking out for us.  In those next few hours there was fear, exhaustion and anger.  The fact that an act of terror like this could happen to such good people … many of them running for family members, cancer patients, rare disease and personal accomplishment left us all in disbelief.  Although I knew there was no way that Wylder was going to let anything happen to his warrior friend Phil and the team, it was hours before we got to there sweet faces, and we were so grateful when they stepped into the car.  Theses acts of terror will not define us.  They can scare the shit out of us, but they cannot take away moments like these …

When we returned to our hotel room around 7pm I was reminded by the hundreds upon hundreds of emails, and messages in our in box from you all the love and compassion in this World.  Let us remember that

When you run out of optimism … you must always turn to Hope.

The warrior Paint Campaign was out of control AWESOME this last week.  I am still downloading photos, but here are a few hundred to start you out with :) Thank you all for participating in this and showing you love and support.

Warrior Paint Campaign Pictures

On our last day in Boston Phil decided to take the day off from work and take Alexa and me to New Hampshire.  Away from the city and the chaos and surrounded by the ocean, the salt water air and Wylder James.  We reflected on this last day about the euphoric feelings that come out of an event like the Boston Marathon and the amazingness of the Rare Disease Team and there commitment to there patient partners.  Although it was a day with sadness it was also a day full of HOPE, goodness of and in people, a reminder of how to be a part of something BIGGER and meaningful.  It was an amazing ending to an amazing trip.

Total funds raised on Phil’s sight from All YOU for NORD was $7,700

Money Raised from Online silent Auction was $10,500

Thank you, thank you, Thank you!!!!  We will see you next year Boston and the Rare Disease Running Team.  You should all be so proud of your accomplishments.  We continue to pray for all those affected and the unity of our county.

Alexa:  Your friendship enriches my soul.

Phil: Thank you for running for Wylder.  It meant so much to us.  You are the goodness that we all need to be reminded of in this world … and you are “Wicked fast” (tee hee).

Wylder:  I know you loved your run with Phil sweet Wylder.  I hope you felt the wind in your hair and the love from all of our hearts.  Thank you for being with us all that day in so many ways. xoxo


the WARRIOR himself


  1. Thank you sooooo very much for sharing this incredible event with us, Shannon! The picture of Phil with Wylder’s Sweet Face on his shirt is beyond precious!!! Thank you, Phil, for running for and with Wylder! xoxoxox God Bless You Always!

  2. Hi shanny!!

    Thank you for turning lemons into lemonade. Your posts are always so special to read especially this one. I thought of both you and Wylder a lot on that day. I am thankful you and the entire Genzyme team are safe and I will always think that you have a guardian angel looking out for you. As I feel my mom is looking out for me. Xoxo

    • Mommy and Daddy says:

      Thank you Brandie. it was certainly a difficult post to write …. but I thought it was important to share the good and the “magic” in the day and what this team is doing. I too am so grateful the team and all the patient partners are okay. You mom is most certainly looking out for you. xoxo

  3. Thank you for sharing your day with me and for sharing this post, I am so glad to have gotten to know your family!
    See you next year Wylder’s warriors!


  4. Love to all of you Warriors. Shannon, you never cease to amaze me.
    Thank you for sharing joy and hope with all of us.


  5. Shannon,

    On behalf of Ann, Matt, Abby, and our greater team of runners and families, I want to thank you for sharing Wylder with us. 18 of us ran and hundreds watched from the sideline at mile 14 or from their homes of offices touched by your little angel. There is no doubt he was with each of us individually On Monday. Our weekend with you was more special and memorable than you could ever know. As I said on Tuesday, I would really have loved to meet Catherine, but you brought in her place one special woman in Alexa. Maybe your little one helped guide that decision as well. Both of you will be forever in our hearts. We look forward to continue this journey with you into the future, officially ‘joining forces so that one child’s life will change many’!

    With Love and Hope Always,

    • Mommy and Daddy says:

      Sharing Wylder is just what he taught us to do Phil … spreading his love and lessons forever gives Steven and I great joy … to watch how he continues to change lives and touch many takes our breath away. We feel the same about our amazing weekend together Phil. Your family and the team will be in our hearts forever. Thank you for running wicked fast for our Warrior!!! xoxo

  6. Shannon and all those running for rare diseases – so glad that everyone was safe and the positive images of that day hopefully will be the memories that stay with everyone. Know that the entire NPD community was running with you and worried about your safety. Thank you!!

    • Mommy and Daddy says:

      Thank you Jill. We felt your worries and prayers and they were very much appreciated. We will hold on to the good memories tight. xoxo

  7. Wow Shannon, what a beautiful and fun post to read! I am so glad it was such a beautiful experience for everyone, thank you for sharing it with us. I am dying to read why Steven is in Maui!!!! Please post soon on that:) We love you guys and are so glad you are safe and that Wylder was there on that day. xoxo ,Chelsea

    • Mommy and Daddy says:

      I will share about Steven soon, I promise. He come home tomorrow and I hope he has lots and lots of photos. PS. Loved reading about Conner’s elephant ride … what a kid! xoxo

  8. Cathy Johnson says:

    What a beautiful post, Shannon. I love all of the pictures and the Warrior paint pics are too much fun. Thank you for reminding us of the hope and beauty of this and every day. xoxoxo

  9. Shane James says:

    Thank you Shannon, Your strenght courage & hope resonates through your beautiful spirit, it was such a pleasure to meet you & Alexa. I wish nothing best for your family & friends, thank you again for the strenght you share. xox

    • Mommy and Daddy says:

      Hi Shane!!! Your ears must have been ringing … Alexa and I have been talking about you non stop. We are so glad we got to meet you this last weekend, you so very inspiring to us. We wish all the same to you. Please let us know if you come to AZ, maybe you can convince Phil to do the Gran-Canyon run with you and we could get a visit?!?!? :) We wish you all the best always. Lots of Love. xoxo

  10. Love how much positivity you all found on such a scary day. I’m so glad it didn’t all get overshadowed- we can’t let that happen! Can’t wait to hear more great ways Wylder is shining light!!

    • Mommy and Daddy says:

      I agree with you 100%. Although there was much sadness in that day and many prayers needed, we mustn’t forget the goodness of the running for rare disease team and others that were so very inspirational that weekend. Thank you Darci. xoxo

  11. Pamela Lynch says:

    Hi Shannon! It was so fantastic to meet you, and I am so fortunate to have had the opportunity to spend the day with you, Alexa and the other wonderful friends and families of the Genzyme Running Team! Thank you for the lovely recap of your experience…we have tried to focus on all the positives of the day as well, they far outshadow the tragedy. We loved spending our day as “warriors”, I had to coax my son to wash his face the next day…he was so proud of his warrior paint! Wylder most definitely was looking out for us that day…the kids and I took the VIP passes, saw my husband finish (which was amazing) and walked out and up the street at 2:45pm. We feel so fortunate, for so many reasons.

    Thank you for sharing Wylder with us, and you are truly an inspiration.

    Love and admiration,
    Pamela, Gavin and Mihret

    • Mommy and Daddy says:

      It was so wonderful to meet you as well. Alexa and I enjoyed our time very much and meeting all the team members, patient partners and friends. I am glad to hear that Mihret wanted to keep that warrior paint on proudly … love it! What a miracle that you were able to watch your husband cross the finish line, and that you ALL mae it our safe! WOW. Please continue to keep in touch. With hope Always, xxoo

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