I’m extremely proud to be selected as part of the Boston Children’s Hospital, NYC Marathon Miles For Miracles team. This is my second time running a marathon for BCH and I’m honored to be running for two very special children. The first, my son Jack, who is 3 years old. The second, my son’s friend Kailyn, who is 2.5 years old.
Jack and Kailyn were both born with a rare genetic disorder called Trichothiodystrophy, or TTD. There are roughly 100 cases of TTD worldwide, and we are fortunate to have Kailyn and her parents near us, in the state of Massachusetts. Jack was the first case of TTD Boston Children’s had ever diagnosed, and Kailyn was the second. Jack and Kailyn’s mommies met in-person for the first time in the Boston Children’s lobby. Just another one of the rare coincidences that have brought these two miracle children together.
Both children have spent countless days and nights at Boston Children’s between various doctor’s appointments and surgeries. Teams of specialists such as GI, Neurology, Audiology, Ophthalmology, Genetics, and Nutrition can make up any given week of appointments. 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.
We are fortunate to have Boston Children’s in our backyard, and cannot stress the importance and impact of BCH on countless families from around the world. Please help us raise money for arguably the world’s best Children’s hospital. Any amount will help me reach my fundraising goal.
Thank you for your supporting Jack and Kailyn on their rare journey.