Matthew’s story

matthew-beachMatthew was born in August 1998 in Italy where we live.

From the first day he had difficulty feeding with either breast milk or formula.  He was hypotonic and floppy but all the doctors said that he was only a bit lazy.  He has gained weight very slowly. Even now, at the age of 10, his weight is 17 kilos (37.5 pounds). We think his low weight allows him to continue to move. If he weighed more it would be very difficult for him to move as all movements are hard for him.

In early childhood, he had delayed motor milestones: he was late in lifting his head while lying on his stomach, rolling over, lifting himself into a sitting position and remaining seated without falling over, balancing, crawling. Finally when he was 12 months old, we decided to go to a hospital specialized in neuromuscular disorders.matthew-chair 

After a few months, he was diagnosed with congenital muscular dystrophy with partial merosin deficiency. We started doing physical and speech therapy 3 times a week. He has no difficulty talking other than saying certain words because of the position of his upper jaw and teeth.

Now Matthew has a power wheelchair at school and a manual one at home. We use a manual chair at home as we cannot bring the heavy power wheelchair home every day. He is able to eat by himself (very slowly) and write. He can’t raise his arms, but he has figured out a strategy to lift his hands on the table. He uses one hand to take the other and lift it up.

Until two years ago he was able to walk with a walk assist device, but now is too difficult because his legs are long and the device is too heavy for him. He used to spend four days a week for about an hour in a stander.

Matthew loves the water and being in the pool. In a shallow pool he can walk on his own. His legs are not straight but the water buoyancy allows him to walk independently. He goes swimming 3 times a week and walks in the pool.

matthew-beach-2At school, he is doing academically well and is following the same curriculum as the rest of the class.

Matthew likes to read, write and swim and he enjoys playing with Nintendo Wii and Ds.

Matthew’s sisters (Chiara,7 and Paola, 4) are healthy. He has a brother, David, adopted at the age of 1.

Matthew and his family send you all a big CIAO from Italy.

Ciao
Alex (Matthew’s Dad)

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  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...

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