To fully live his life, young Matthew needs wheels
The Boston Globe | October 16, 2011 | By Beverly Beckham
H e wants to play hide and seek with his 5-year-old brother, Noah. He wants to see the birds he hears in the trees and the firetrucks that zoom past his house with their sirens on. But he has to wait for someone to carry him to the door to look outside. And birds and firetrucks don’t wait.
Matthew Davidopoulos of Lowell is a typical toddler in so many ways. He’s smart and talkative and curious and bursting to do all that he can. He loves to color and paint and play with his iPad and watch movies (“Cars’’ is his favorite). He has dark blond hair and perfect baby teeth and bright blue eyes.
It’s having spinal muscular atrophy that separates him from most kids his age. It’s being unable to sit or stand or walk or dress himself or even stamp his foot when he gets angry.
He was diagnosed with SMA when he was 8 months old, a week before Christmas. Doctors told his parents, Courtney and Paul, not only that Matthew had a degenerative muscle disease but that he would not live to be 2. They were given a Do Not Resuscitate form to fill out.
Matthew is 2 ½ now, and though his life is not easy, it’s his life. Every night his parents hook him up to a feeding tube to provide the nutrients he needs but cannot get by eating. Every morning they use a machine to clear congestion in his chest that accumulates overnight. Then they bathe and dress him and get him ready for the day. They carry him downstairs, where he has to wear a special vest for about 20 minutes to further loosen congestion. Then he is strapped into a “stander’’ for two to three hours of weight-bearing pressure on his legs. Three times a week, he has physical therapy, once a week he has play therapy and aqua therapy, and once a week he goes to a playgroup with typical kids.
All this, and he is a happy child.
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