Every parent knows that helpless feeling when your child is sick. Most kids get better. Our son did not. It was 2010 and after a year of unexplained swelling in Carson’s mouth and face, we were desperate for a diagnosis. That’s when we found ourselves at Boston Children’s Hospital (BCH) and in the office of a man whose name seemed a good omen for the extra help we needed: Doctor Docktor.
Dr. Michael Docktor (https://youtu.be/sSn1aPu1s6s) was confident and relaxed. Carson laughed at his name and the two established an instant rapport. He then empowered Carson to be part of our decision-making processes. He explained things in such a way that our six-year old could fully comprehend yet not freak out. It took what seemed like countless visits and tests, but Dr. Docktor quickly found the answer: Carson had Orofacial Granulomatosis (OFG), a rare chronic inflammatory condition of the mouth often associated with Crohn’s Disease. Four years later, this diagnosis led to an early diagnosis of Crohn’s Disease throughout Carson’s intestines.
But while we had an answer, there was no cure: Crohn’s Disease is a chronic condition for which there is no cure. Carson “manages” his disease with weekly injections and oral doses of immunosuppressants. Still he often has “flares” which result in painful ulcers and fissures in his mouth, abdominal pain, and severe constipation. The immunosuppressants also leave him more susceptible to virus and infections. If not for the use of cutting-edge technology in telemedicine that he piloted with Dr. Docktor – enabling them to securely video conference their appointments – he would have missed even more school, been exposed to more germs, not to mention cost us more time and money!
When Carson thought about others like him – especially those who had less than us – who might benefit, he acted. He teamed up with BCH’s Government Relations to testify on Beacon Hill on behalf of telemedicine. He also started speaking, educating, and fundraising for a cure for Crohn’s. (www.sumry.me/carsondomey)
That’s just what Carson has done recently as he refuses to be defined by his disease. Long before he did any of that he started Carson’s Crew for the Eversource Walk for Boston Children's Hospital.
If you have been a part of this walk, you know Carson thinks it’s better than Christmas! His family and friends travel by plane, train, and caravan to come together, laugh, leave worries behind, and walk around the Charles River in their bright yellow Carson Crew shirts to raise money for Boston Children's Hospital and to say “thank- you”!
Sunday, June 10th will be the 5th time Carson’s Crew walks and we have set a big goal and an important person to celebrate: $50,000 that will directly support Dr. Docktor’s initiatives in Innovation & Technology at Boston Children's Hospital. Together, will help forge innovation by creating tools, technologies and techniques that will help shape pediatric medicine and impact the lives of children everywhere!
Please consider joinng our team or making a donation to one of our Carson's Crew Team Members.
With all our gratitude,
Michelle, Chris & Carson Domey