Hello all and thank you for finding your way to our fundraising site!
I am humbled to be chosen to run in the 2018 Boston Marathon for the Credit Unions Kids @ Heart Team in partnership with Boston Children’s Hospital. My buddy Everett will be eagerly waiting for me on Boylston St so he can watch me cross the finish line in his honor!
Everett is a happy and energetic thirteen year old boy who is seen on a regular basis by various doctors at Children’s Hospital. Everett has Menkes Syndrome also known as Kinky Hair syndrome. Menkes is a copper deficiency and typically found in boys. The onset of Menkes disease typically begins during infancy, affecting about 1 in 250,000 newborns. The life expectancy if 3-10 years, Everett was diagnosed around the age of 7 which is atypical since he does not have the mutation of the APTA7 gene. Everett was also diagnosed last March with serve osteoporosis and receives infusions every 4-6 weeks to help strengthen his bones. His medical conditions don’t define him; Everett is a fun kid with a very infectious laugh. Everett enjoys camping, swimming, bike riding, skiing and ice skating. He even went water skiing last summer.
Everett has been a patient partner through the CU Kids @ Heart program for many years and this will be my fourth Boston Marathon with the CU Kids@Heart team. This program was established in 1996 by Jane Melchionda and through the years has raised more than $5 Million for Boston Children’s Hospital! The funds have helped support a variety of special research projects, including the search for treatments, therapies, and cures for brain tumors, Moyamoya disease, Sturge-Weber syndrome, and Cerebral Palsy. This important research is used by pediatric hospitals and other care centers all over the world.
So, I’m calling all you angels to support our efforts by making a tax-deductible donation! Thank you.
PS – if I place 1st in the Marathon you are all invited to the after-party!