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 were grateful come Sunday to be a part of the Hope Kids Walk because it lifted our spirits to see lots of Warrior Babies with smiles and just overflowing with hope.  We also were reminded how supported we are by the Hope Kids support system (they did not just go away).     

Driving to the event for set up … I found myself overwhelmed with emotions.  Even at one point, considering turning around and skipping the event all together this year.  Then as I saw all these beautiful children, many of them beating the odds … my spirits were lifted.  Family and friends arrive to support us and we met so many families we have been connect to via the Internet … but this time we actually got REAL hugs.  That part was so wonderful.  Wylder’s book left in the hand of 15 more Hope Kids who’s faces literally lit up with delight as they turned each page.  It felt magical.   

Seeing the children react to the books was such a treat for me.  It was like they “got it”.  As I read Wylder’s book I often find myself hoping parents will get messages as they read it to their little ones, but this time , this weekend I saw the kids.  There eyes lit up .. they could relate.  They saw the mask Wylder was wearing on the first page and recognized they often wear one themselves, they giggled at the dog, and when they saw the oxygen tubes .. they point to their own.  I realized it was the first time I saw a kids reactions, that related to the book … most of the books have been sent out and I don’t see your children enjoy it in your living rooms.  I was happy that they recognized the medical gear and that they liked to see it in a book.  I also find it fascinating how so many special needs children just dive into books.  What a love they have for them.  Wylder was just the same.  Toys came and went … but books where his love.   This got me thinking again, YIKES …I know, a scary thought … me thinking so much (tee hee).  I am putting together a Wylder Nation Kids Christmas Challenge.  I am excited.  It is in the VERY early stages and will be simple, but I will get to the scoop to all of you soon.  If you know of any elementary/preK schools in your area that like to give back … please email me and I will give you the inside scoop.

More good news is that Steven is going to be able to come to Nantucket for part of the stay.  Wew hew hew.  He is gonna love it there, I cannot wait to see if this island has the same affect on him as it did on me.  On the final day of his stay he has also planned a meeting with  Genzyme.  For those of you that have not been following Wylder’s blog for 2-1/2 years …  Genzyme is committed to discovering and delivering trans-formative therapies for patients with rare and special unmet medical needs, providing hope where there was none before .. and they are in Boston.  Steven worked hand with them and Mount Sinai when we were attempting to get a single Patient IND for Wylder in early 2011.  They even met Steven in NY for research discussions and are pivotal in future research and bring meds to market (perfect timing for Wylder Nation becoming a non-profit soon).  This will be Steven’s first time to the facility and he is amped! Hope your weekend were filled with lots of love and giggles.  xoxo



  1. As hard it was Shannon, I’m so proud that you “persevered” and attended the event…..and look how much joy Sweet Wylder brought to the children….I’ve said it before and I’ll never tire of saying it again….Wylder’s legacy will carry on forever. PS — love that pic at the end of Wylder and Maddie “me and my dog xoxox”

  2. Cathy Johnson says:

    Good for you, Shannon for toughing it out and attending. It must have been so hard, yet so gratifying. You are one brave and special mama. And, wow! Yay! Steven is going to Tucket! I’m so sure that you two will have a very magical time there and I’m really looking forward to hearing about Steven’s experience at Genzyme and more about your Christmas Challenge. And, by the way, I love the me and my dog picture too. Pure sweetness!

  3. oh my goodness my heart skipped a beat when i read that the children pointed to the tubes in the book. That is exactly why you made it! I am so happy those sweet babies have a book that protrays them as strong and special not sick. You are an amazing woman. xoxo

  4. Jessie Budd-Thanos says:

    This is the first time I have commented on this blog, but have followed it for about a year. I just wanted to express how much I appreciate your honesty, genuineness, love, respect, loyalty and dedication to the cause and to Wylder! It is inspiring and amazing! Also, the picture of baby and pup is amazing! It shows the strength of the animal/human bond and how powerful it can be! I feel so grateful to read your blog and share in Wylder’s legacy!! Thank you!

  5. Cari Gallo says:

    Steven needs to let Joe know when he is going to be there….he might join? We are both looking into some things for him that might work out…we are trying. :) True Foods opens in Cherry Creek on the 29th, and with Joey working there now, I am sure I will become a regular visitor. We are in AZ Nov 6-13th….Let’s do another dinner….look forward to seeing you both. Cari

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