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Michael Anthony

Michael Anthony

MMA, Cbl C

The last time we featured an article in the OAA newsletter was back in the winter of 2009 when Mike was 14.  Fast forward about 9 years.  Michael is now 23 years old!  Since writing that article some things have changed, and some have not.  As a family we have helped Mike overcome many challenges and I am sure we will continue to do so as one never knows what the future holds.  We 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!  I believe this motto is what has helped us get to where we are today.

Mike finished high school in 5 years and was told in one way, shape or form that he probably shouldn’t/couldn’t go to college.  Well Mike disagreed with his special services team and proved them wrong.  After much research on the web we came upon a site that I STRONGLY recommend parents of teens with disabilities look at.  Thinkcollege.net is the site.  It is wonderful.  You can click on any state on the map to learn about activities related to postsecondary education for students with intellectual disability in that state. We found a program, DREAM PROGRAM, at Mercer County Community College in NJ. The faculty and peer mentoring program that they run was the best thing that happened to Mike.  With the help of current Mercer College students who have been trained as peer mentors, Mike was able to attend academic classes such as college reading, pre-algebra, Myths and Magic, anthropology and history just to name a few, participate in recreational activities, participate in career exploration and was able to acquire skills necessary to enter the world of work. We won’t even mention the emotional and social boost this had on his psyche or the group of friends he made and still talks to.

Was it all “peaches and cream”?  Of course not.  We had our share of rotten apples to deal with but we, and more importantly Mike, kept at it.  He was so determined to make it work.  After two years of driving one hour each way, twice a week while working full time and trying not to ignore my husband and other son, we took a look at our long-term goal.  Mike had certainly met many short-term goals and now it was time to revise or update our plan. Although we were very proud of Mike for all that he was accomplishing, we had to come up with a more definitive plan.  We started looking at the Continuing Education certificate programs offered at Mercer and came upon this popular program designed for the student interested in pursuing a career as a veterinary assistant.  Mike was able to successfully complete all modules of the certificate program which included:  Introduction to the Veterinary Profession, Nursing Skills-Part I, Nursing Skills-Part II, Laboratory Skills and an 85-hour Clinical Externship.

Was it all “peaches and cream”?  Of course not.  It was an entire family effort that helped Mike with studying, reading, making enlarged index cards, doing homework, emailing instructors, so on and so forth.  His 85year old nonno (grandfather) played a big role in acting as a tutor/mentor.  One year later and 5 attempts at the 100 questions, timed, national certification exam (not to mention tears and sweat), Mike did it, he passed with flying colors.  I will never forget the sight of him running out of the exam room, jumping and smiling and crying out “whooo hooo, I did it!”  Priceless and worth every mile we drove back and forth, all the crying and all the times it became frustrating. 

We are grateful for all the resources, supports and good-hearted people out there who are part of Mike’s life.  He has received services from the Commission of the Blind and Visually Impaired since birth.  He receives assistance from Division of Developmental Disabilities.  He has Medicaid.  He receives services from Advancing Opportunities, an agency that provides job coaches/development. 

Currently Mike is working two days a week for a logistics family owned company and the other two days a week he is doing an internship at local animal hospital.  He attends karate a few times a week and the local YMCA.  He enjoys music, going to the movies with his brother, getting together will some friends that he met while in the Vet Program, going on walks and his two dogs.  He is enjoying life!

We visit Dr. Charles Venditti and his genetic team once a year.  He has recently started seeing new genetic MD in New Jersey that is following some teens with CblC. 

We still try to organize events to raise monies for Dr. Venditti’s research.

Just last week Mike was invited back to Mercer to present a keynote speech.  Every year the New Jersey Department of Education’s Office of Special Education Professional Development sponsor’s this conference featuring accomplished students and young adults with disabilities who have demonstrated exemplary self advocacy and leadership skills.  What an honor!

Is it all “peaches and cream”?  Of course not.  Mike goes on many interviews that are a dead end.  Mike social circle is not as large as other young adults his age.  Mike is aware that his eyesight cannot be corrected to a normal level.  He knows he will never drive and that he takes longer to read something.  He is very well aware that he is not being called back from these interviews because of his vision and other challenges.  But Mike also knows that he is not giving up.  He has come so far and will wait for however long it takes to find the person who will give him a chance.  He has the support of family, friends and agencies.  He has learned independence, determination and self advocacy.  This is a direct quote from Mike: “No matter who tells you different, if you put your mind to something and work hard, you will achieve what you set out to do!”
Thanks for letting us update you on Mike’s life.

Josephine and Robert

From the Spring 2018 OAA Newsletter

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

From the Winter 2009 OAA Newsletter

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