We will be participating in our 4th Boston Children's Hospital Walk this year in support of my nephew, Bejamin! Ben has been followed by BCH since birth. This past year, Benjamin was diagnosed with a rare genetic disorder called Cohen Syndrome. We are so very lucky to have BCH in our backyard for all of Ben's continued care and treatment.
Ben is closely followed by Cardiology, Developmental Pediatrics, Hematology, Opthamalothy, Physical Therapy, Orthopedics, Augmentative Communication and Neurology at BCH. We are so grateful for the comprehensive care he's received these past 4 years.
In addition to being the most joyful kid around town, Ben has also advocated on a local and state level for enacting a Rare Disease Advisory Council in NH. We testified at the State House to both the House and the Senate. Ben charmed all the legislators and the bill was officially signed into law last week!
Our family appreciates all the continued love and support!