Matthew

MMA, Cbl C

Matthew is my fourth born child and is 19 years old. It took us 5 1/2 months of searching for the right doctor before he was finally diagnosed with Methylmalonic Aciduria, type C, with Homocystinuria. He also has hydrocephalus (which is associated with very few MMA children) and had to have a vp shunt put in to drain the fluid from his brain. The shunt is the thing that gives us the most problems. He has had to have numerous surgeries to keep it functioning. He has a heart condition also, called pulmonary stenosis. His vision is impaired but we have had a couple of surgeries to correct strabismus and nystagmus. He seems to have only peripheral vision and no depth perception. He also had something called a thyroglossal duct cyst which took two surgeries to totally remove.

Matthew eats very well, pretty much anything he wants. He takes his B-12 injection daily, along with carnitor and cystadane. He drinks pro-phree formula also. He is a very big boy, weighing in at about 165 lbs. and is 5 ft. 7 inches tall. He does walk, but will tire easily so we use a wheelchair for long distances. Plus the wheelchair gives us a little control over him. He can be very stubborn at times. He communicates to all that are with him on a regular basis. He is definitely getting more verbal everyday. The learning never stops! He is still in diapers, needs assistance to bathe, eat, dress, etc. He loves to go bowling, see movies, and play on the computer and playstation. But his favorite thing of all is to ride! He could ride around in a car with the radio playing all day long. He is absolutely fascinated with airplanes too. We take him once or twice a year to Disneyworld so he can fly and ride the monorails, buses, boats, etc.

Matthew has 3 older siblings, none are afflicted with MMA, but two are carriers. They are absolutely wonderful with their “little” brother. God knew what he was doing when he sent me Allison, Adam and Rachel first. They really do their part in playing with him and helping me when I need them. My husband, Tommy, is a big help in that he loves to play playstation as much as Matt, so that means I don’t have to learn how!

Well, I think that about covers everything. All that is left to say is that Matthew is a very complicated, exhausting, and demanding boy, but we all love him so much! He has a very sweet personality that brings out the best in everyone he meets. I truly believe that he is both a gift and a test from God. I try to do as much as I can for Matt to make him happy without spoiling him rotten. I have to admit, discipline is the one thing I have not mastered with him. My only goal is to keep him healthy and happy, happy, happy!
We would love to hear from anyone concerning MMA.

Karen and Tommy
Thibodaux LA  70301
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From the Summer 2009 OAA Newsletter