Wolf-Hirschhorn Syndrome-Some FACTS
Kids DO NOT usually die by the age of 2 years old. Yes, it can happen, but that is rare now. Most kids/adults with the syndrome live for well into their 30's, 40's and there is a lady in the US who is 62 years old. She is actually one of the first patients ever diagnosed. It is a chromosomal disorder which effects the short arm of chromosome 4. It is not caused by drugs, alcohol or poor eating throughout a pregnancy. It is not caused by poor parenting. For 80% of cases, it is something that has occurred spontaneously at conception and is not likely to happen ever again. In the remaining 20% of cases, one of the parents will have something called a balanced translocation. Without going into the genetics too much, it basically means that the parent has passed on the faulty gene at conception. This happened in our case. Something I had no idea of when I conceived Ryley. Seizures-85% of all children will have some sort of seizure activity. Most grow out of their seizures by the ag…
So very, very true......
ReplyDeleteIt is well said hey? Keep on keeping on and eventually you get there. No matter how hard it is sometimes.
DeleteWell said! I hope things are okay.
ReplyDeleteYep all ok E. Just needed some words to boost me for my run. And really. To boost me for all that life throws at me xoxx
DeleteGreat quote that can be thought about in a myriad of ways. Thanks for posting it --
ReplyDeleteThanks Elizabeth, I am not a huge fan of soppy quotes, so when one stands out, I tend to share it. It can be taken many ways, which is what I liked!
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