The Christianville Spirit
The Spirit that touches Your Life
April 29, 2009- TCS # 146
For those of you who have been following with this newsletter know I haven’t had a Series in a while. So, I’ve decided to do another series. You see, there are a lot of people who follow this newsletter for the sake of what is happening and what will happen to their child with Potocki-Lupski Syndrome so, I thought that I would try to help you with another series. We’ll call this “Potocki-Lupski Syndrome: Christian’s Story”. so, without a due this is “Potocki-Lupski Syndrome: Christian’s Story”. For those of you who don’t know, I was the first official person in The United States and the 4th in The World diagnosed with what is now known as Potocki-Lupski Syndrome. Back then, it was just known as a duplication of chromosome 17 p.11.2 which when I wanted to tell people about it; I would just say “I have a Duplication of Chromosome 17” which no one knew what the world it was. Now, there were several differences that were unlike normal kids. I have a lot of Texture Issues and I wouldn’t eat anything besides Macaroni n’ Cheese and Yogurt. I started talking when I was 4 but it wasn’t that clear. In fact, when people talked to me and asked me to repeat myself; I had to repeat myself several times and that frustrated me. So, when I had to do it; each time I had to repeat myself and talked a bit louder so, people could hear me. Now, I had Speech Therapy from when I was 15 Months Old to about My Junior Year of High School. I had a lot of fears like getting on a slide, a swing, and a boat but, once I was put on it and it got going I loved it and I wouldn’t get off. All in all, If your child is afraid of something they shouldn’t be, just put them on. But, be ready because they won’t want to get off
Thanks for reading The Christianville Spirit. All Special Needs people want the most is understanding for everyone.
If you would like to Comment, Read past newsletters. Go to thechristianvillespirit.blogspot.com
And, if your interested in the Christianville Metro Area go to our sister site, christianvilletribune.blogspot.com
The Spirit that touches Your Life
April 29, 2009- TCS # 146
For those of you who have been following with this newsletter know I haven’t had a Series in a while. So, I’ve decided to do another series. You see, there are a lot of people who follow this newsletter for the sake of what is happening and what will happen to their child with Potocki-Lupski Syndrome so, I thought that I would try to help you with another series. We’ll call this “Potocki-Lupski Syndrome: Christian’s Story”. so, without a due this is “Potocki-Lupski Syndrome: Christian’s Story”. For those of you who don’t know, I was the first official person in The United States and the 4th in The World diagnosed with what is now known as Potocki-Lupski Syndrome. Back then, it was just known as a duplication of chromosome 17 p.11.2 which when I wanted to tell people about it; I would just say “I have a Duplication of Chromosome 17” which no one knew what the world it was. Now, there were several differences that were unlike normal kids. I have a lot of Texture Issues and I wouldn’t eat anything besides Macaroni n’ Cheese and Yogurt. I started talking when I was 4 but it wasn’t that clear. In fact, when people talked to me and asked me to repeat myself; I had to repeat myself several times and that frustrated me. So, when I had to do it; each time I had to repeat myself and talked a bit louder so, people could hear me. Now, I had Speech Therapy from when I was 15 Months Old to about My Junior Year of High School. I had a lot of fears like getting on a slide, a swing, and a boat but, once I was put on it and it got going I loved it and I wouldn’t get off. All in all, If your child is afraid of something they shouldn’t be, just put them on. But, be ready because they won’t want to get off
Thanks for reading The Christianville Spirit. All Special Needs people want the most is understanding for everyone.
If you would like to Comment, Read past newsletters. Go to thechristianvillespirit.blogspot.com
And, if your interested in the Christianville Metro Area go to our sister site, christianvilletribune.blogspot.com
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