Thank you for being part of this journey, as I prepare for my 4th marathon with the Boston Children’s Hospital Miles for Miracles team. I run in memory of my son Jack and in support of his girlfriend Kailyn.
Jack and Kailyn were born just months apart and share a very rare genetic condition called Trichothiodystrophy, or TTD. There are roughly 100 cases of TTD worldwide, and Jack was the first case Boston Children’s Hospital had ever diagnosed, and Kailyn was the second. TTD symptoms can range from mild to severe and characteristics include brittle hair, scaly skin, extreme sensitivity to UV rays and sunlight, poor vision & early cataracts, hearing loss, developmental delays, stunted growth, and frequent respiratory infections. Both children have spent countless days and nights at Boston Children’s between various doctor’s appointments and surgeries. Despite these challenges, these children are full of love and giggles and approach every day with laughs, determination, and a smile on their face.
I chose to run this year’s Boston Marathon to not only bring awareness to TTD, but to shine a light on what Boston Children’s Hospital and their staff give to countless families and children like Jack. My family experienced the most genuine staff of doctors, nurses, specialists and healthcare providers at BCH and I would like to extend a special thank you to the entire team who cared for Jack in his last 41 days. <3
Jack truly was a miracle, who left a lasting imprint on every person who had the opportunity to see his infectious smile or hear his giggle. July 18, 2021 would have been Jack’s 6th birthday. Please help me raise money for arguably the world’s best Children’s hospital. Every dollar will help me reach my fundraising goal.
Thank you for supporting all of Jack’s friends like Kailyn, their families, and Boston Children’s Hospital.
“If ever there is tomorrow when we’re not together…there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing it, even if we’re apart…I’ll always be with you.” – A.A. Milne, Winnie the Pooh