By Bob Katzen
The House gave initial approval to a bill designating the Friday of the third full week of September as Noah Fernandes Mitochondrial Disease Awareness Day, in recognition of the Team Noah Foundation, whose goal is to alleviate the financial and emotional stress by providing transportation and home improvements to families with children who are affected by Mitochondrial Disease and other developmental disabilities.
“Noah Fernandes was the son of a friend, Victor Fernandes, who is a business leader in New Bedford and very involved in our community,” said sponsor Rep. Tony Cabral (D-New Bedford). “Noah was diagnosed with Melas, one of the most severe forms of Mitochondrial disease when he was five years old. For the next 10 years, Noah’s muscular and mental condition deteriorated as juvenile dementia overtook his body and left him unable to move or speak until he passed away at age 15.”
Cabral continued, “Within their grief, Victor and Noah’s mom, Christine Fernandes, launched the Team Noah Foundation – a non-profit which helps the families of severely disabled children with conversion projects to make their homes more handicap-accessible and to help provide specialized vans, bicycles and other transportation needs. The Team Noah Foundation also was the driving force behind the Noah’s Place Playground in New Bedford which is the largest and most inclusive playground in New England. Given the great work that the Team Noah Foundation does, in the memory of Noah Fernandes, it seemed only fitting to acknowledge this and bring awareness of this disease to the state level.”