Many of you know about my son Jackson’s journey as both a stroke and Moyamoya disease survivor. On March 17, 2013, Jackson (17 months old) suffered a massive, ischemic stroke to the right side of his brain leaving him left sided weakened. Doctors worked night and day to try and determine the route cause of his stroke. Jackson lived at Boston Children’s Hospital (BCH) and Spaulding Rehabilitation Center for 48 days where he underwent rigorous PT, OT and speech therapy. The care and services he received at BCH saved his life.
Three months after his stroke, Jackson was diagnosed with a rare, progressive brain disease called Moyamoya. This disease affects 1 in 120,000 people. In order to survive, Jackson underwent his first bilateral brain surgery, on September 11, 2013 at BCH, to restore blood flow to the brain. On September 8, 2015, Jackson underwent his second brain surgery to restore blood flow to the section of the brain where the disease had spread. We feel so fortunate to live so close to BCH where Dr. Smith practices. Dr. Smith can be credited with perfecting the procedure, Pial Synangiosis, that ultimately saves children with Moyamoya disease. Not only does Dr. Smith save the lives of children with Moyamoya, he also devotes countless hours of time to his research efforts for Momaymoya disease and other neurological illnesses. Dr. Smith’s passion and commitment to Moyamoya research is truly awe-inspiring.
I am honored to run the 2018 Boston Marathon with the Credit Unions Kids at Heart Team (CU K@H). This will be my second time running with the CU K@H Team, but my family has been a part of the team for five years. Established in 1996, by Jane Melchionda, the CU K@H Team is dedicated to helping children, receiving care at BCH, lead healthy and happy lives. For the past several years, the CU K@H Team has worked closely with the scientists and doctors at BCH to fund special research activities aimed at the prevention, treatment, and/or cure of pediatric neurological diseases, including Sturge-Weber Syndrome, Moyamoya disease, Cerebral Palsy, and pediatric brain tumors. Each runner is paired with a patient partner child who is receiving care at BCH. Many of the patient partners have extraordinary medical challenges, but also possess great spirit, strength, courage and determination. These incredible children, who overcome their own challenges every day, inspire the runners to achieve personal goals that they never thought possible. I am proud to say my patient partner is my son, Jackson. I am amazed at all he has accomplished over the past 4 1/2 years since his initial stroke. He inspires me each day and helps me strive to be a better person. Last year, the CU K@H donated $122,000 to Dr. Smith for Moyamoya research, plus an additinoal $300,000 to the other research projects. This year, the funds that I raise will be put towards another $100,000 donation that the team is planning to make for Moyamoya research. This will make over $500,000 that has been donated for Dr. Smith’s research efforts in five years time! That is an amazing amount of money, and I cannot thank the CU K@H Team for being as passionate about Moyamoya research as I am.
Please support my fundraising efforts and Dr. Smith’s important research efforts for Moyamoya disease.
As Children’s Hospital says: “Until every child is well.”