ZACHARY – 12 years old

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Looking back, the signs were all there... However it was not until he was 10 that Zach finally got the diagnosis. He was a full term baby weight 5 lbs. 8 oz. When taking his very first bottle he started chocking and turned blue. He was whisked away to the neonatal unit where he stayed for the next seven days.

I was told he did not know how to latch on to the bottle. In the mean time, they looked at his heart and poked and prodded him. After he came home the troubles began. He vomited out of his nose every day. He was sick all the time...ear infections, bronchitis, rsv, pneumonia, whooping name he got it. When he was 15 months old he had his first seizure. He stopped breathing as I called 911. He had two more seizures in the ambulance. The next day they told me it was a feibral seizure brought on by high fever and not to worry. They said only 30 percent of kids ever have another one. Of course Zach was in that thirty percent. He had approximately 14 which thankfully stopped around the age of four.

Zach didn’t walk until he was 22 months old. He didn’t say his first word until he was four years old. I was told not to worry because he understood us....Just a slow talker. His front teeth began rotting away around the age of three years old. At age five, he had dental surgery. Four teeth pulled, two root canals and four teeth capped. I knew something was wrong with my kid. He had been to his cardiologist when he was a baby. I took him back when he was six and was told he had a vascular ring. This was cutting off his air supply and making eating very difficult. He had surgery and stayed in the hospital six days.

Upon starting school we faced more new challenges. I must give credit to our SSD teachers, they worked tirelessly on speech and OT. We had a diagnosis of ADD so Zach could receive special services. I knew in my heart there was something else going on.

I took him back to his cardiologist thinking it had to be his heart. It was then that his doctor told me he thought Zach had 22Q and wanted to test him. When I learned he did I was shocked… sad… but relieved that I finally had some sort of answer.

Zachary will be starting middle school this year which is terrifying for me. He has substantial learning disabilities and now that he is older he is having a lot of anxiety. Lately he has been exhibiting OCD behavior and other issues of this sort.

Zach is a very sweet kid and likes everyone! He is extremely shy with new people and will not make eye contact. However, after he is comfortable with you he becomes quite a chatterbox and comedian. He loves being on the computer and playing video games. He still gets frequent infections which causes him to miss a lot of school. What is hard is that most people (including his educators) are not familiar with this syndrome. This can make you feel helpless while you are trying to advocate for your child.

I have started digging to learn more so that I can help him. He did not get the advantage of early help which surely would have been a blessing. But I am thankful I have him. He is the toughest little guy I know and I cannot imagine my life without him!

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