Every month we like to spotlight a business, non-profit, or individual who contributes to the positive culture of our north shore community. This month we are spotlighting one of our clients and one of the runners selected as part of the Boston Children’s Hospital, 2020 Boston Marathon Miles For Miracles team – Gabe Gagne.
While this Boston Marathon will be Gabe’s third time running, this April 20, 2020, he is running in loving memory of his son Jack, and Jack’s best friend, Kailyn. Both Jack and Kailyn were born with the rare genetic disorder called Trichothiodystrophy, or TTD.
What is Trichothiodystrophy TTD?
Trichothiodystrophy is a hereditary disorder characterized by symptoms such as: 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. Symptoms of this disease can range from mild to severe.
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. Both children have spent countless days and nights at Boston Children’s between various doctor’s appointments and surgeries.
A year ago, just after Thanksgiving, Jack was taken to the emergency room at Children’s Hospital which was a common trip every winter. This stay quickly proved to be different – two days into the stay being intubated and moved to a form of life support called ECMO (machine support for the heart and lungs).
Jack had just battled three bouts of pneumonia prior to this admission and now had adenovirus, a virus currently without treatment. The emotional roller coaster of small victories and sadness experienced over this 41-day stay had an unfathomable outcome.
Although the Gagne’s painfully lost their son, they are still extremely grateful for the amazing doctors, nurses, ECMO staff, and specialists who did everything they could for Jack. After bonding with staff over stories, pictures, and giggling videos of Jack, they gained numerous friendships. Gabe is running as a thank you to Jack’s team at Children’s, and the continuous hope and support they provide to Kailyn’s family, and countless other families.
How You Can Help
To honor Jack and his infectious smile and glee-filled giggle, Gabe is running the Boston Marathon. Please help Gabe and his family reach his goal of fundraising for Boston Children’s Hospital, arguably the world’s best Children’s hospital. Every dollar will help him reach his fundraising goal.
On March 30, 2020, from 6:30-10:30 at Spinelli’s Function Hall 10 Newbury Street (Route 1) Peabody, MA, Gabe is holding a fundraiser for his running team and his loving son Jack. The tickets for the event are $40 each and they will have auctions, appetizers, and drinks! Please check out the evite to attend or his fundraising page to donate.