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Michael Anthony

Michael Anthony

MMA, Cbl C

Michael was born on August 23, 1994. He was born right on his due date, 6lbs. 10 ozs. A few days after birth, we went for his first newborn visit. All seemed well. He received his first shots with no side affects. Over the next day or two Michael was sleeping for longer and longer periods. Being a first time mom I thought I was very lucky to have a newborn who was already sleeping through the night. From here, our story sounds very much like the stories other OAA families have shared in previous newsletters.

Michael crashed and burned very quickly. I think in a way we were lucky that events happened the way they did. I believe Michael is functioning as well as he is today partly because he was diagnosed at two weeks old. He stopped feeding, became lethargic and wouldn’t open his eyes. He was slowly going into a coma.

We were admitted into Columbia Presbyterian Babies Hospital in New York City after our pediatrician here in New Jersey couldn’t tell us for sure what was wrong. At Columbia, Dr. Daryl DeVivo, a neurologist, diagnosed him with an inborn error of metabolism- an inability to metabolize B12. We stayed at Columbia for about 3-4 weeks. In that time at the hospital Michael’s skin sample was sent to Dr. Rosenblatt in Canada to make a definite diagnosis and Michael was started on the treatment regime that is so very familiar to other cobalamin families.

We were home in time to celebrate his first Halloween. Getting Michael to eat was the focus of our existence for the next year and a half. At about 18 months we finally gave in and had a feeding tube placed. That was probably one of the best decisions we made. He was receiving OT, PT and speech. By two and a half he underwent strabismus surgery to correct the crossing over of both his eyes.

By this time we had started going to Johns Hopkins under the care of Dr. Ada Hamosh. (Both surgeries were done at Hopkins.) To date, we are under her care and see her twice a year for bloodwork, measure growth and to meet with a nutritionist.

Michael has a pretty cool dad and uncle. Not only are both brothers physicians, they happen to also be musically talented. As an added bonus his uncle, the drummer, did a residency at Johns Hopkins and this is how we came to know of their genetic department. He now works at Columbia Presbyterian which I mentioned above is where Michael was diagnosed. About four years ago the two brothers decided to use their music as an avenue to raise money for Michael’s cause. This way the beginning of The Michael Clapcich Fund for Retinal Research. We started a website for Michael which many of you may have already looked at: www.michaelsfund.org and we are a registered- nonprofit 501©3 corporation. We try to have one large fundraiser yearly and a few smaller ones throughout the year. This year we had the pleasure of having Dr. Venditti come to the fundraiser we held on November 2008 in NYC. All proceeds will be directed towards Dr. Venditti’s research. We met Dr. Venditti for the first time in the summer of 2006. Michael participated in the clinical study at the NIH. We hope to return for a second visit this coming April.

Today Michael is a happy 14 year old. He is a great kid who is kind, friendly, loves school, music, and listening to books on tape. He doesn’t let anything stand in his way. He is currently in 8th grade. Socially and cognitively he functions at about the level of a 5th or 6th grader. He is visually impaired and receives services from the Commission for the Blind of NJ. He is learning braille in the event that he may need to use it one day. He is in smaller classes and has an aide for part of the day. He is a blue belt and will be in this years school play. He has an 11 year old brother and loves his 8 y.o. yellow lab. He is on the medications that are common household names to our families: B-12 shots 3x week, folic acid, betaine ( 4scoops 2x daily), carnitor, caltrate for his bones, and centrum. He eats whatever he wants. From day one we have never monitored his protein intake! This may come as a shock to many of you who painstakingly calculate protein intake everyday! It just goes to show how similar yet different our kids are. He has a natural aversion to meats—although he loves McDonalds cheeseburgers! Even so he still has a g-tube in place it is really just used for medications and when he has had a bad intake day I will give him prophree mixed with 8oz. of regular milk. He is small for his age: 5 feet 1 inch and about 90 pounds.

There have been many challenges that we have had to face in the last 14 years and I am certain we will be faced with many more. Such is life. I try not to worry about the many things I am sure many others worry about. We just take one day at a time and enjoy the present because that is just what it is—a present! Maybe he will go to college, maybe he won’t. Maybe he will get married one day, maybe he won’t. That all remains to be seen. For the moment we are helping him to be the best that he can. That is pretty much our story. Thank you for letting us share it with you.

Josephine and Robert
Stirling, New Jersey
http://www.michaelsfund.org

From the Winter 2009 OAA Newsletter

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