Determination Bears Hope
Written by AHCKIDS, published 6 months ago.
This is a video about 4 year old Matthew Wuchich, who is the "poster child" for the AHC Foundation, and son of AHC Foundation President Jeff Wuchich
This video has the title of this post: www.youtube.com/watch?v=4F3qk9qT-tU
Imagine your child suddenly lost the use of one or more of their limbs for minutes, hours, even days. Imagine these episodes were often painful. Imagine this mysterious disorder essentially caused parts of the brain to “short circuit”, and affected your child’s ability to learn. These are the sad realities for those afflicted with Alternating Hemiplegia of Childhood (AHC), an extremely rare neurological disorder. Only 700 or so cases have been identified in the world!
This 3 minute video provides more detail www.youtube.com/watch?v=jZ5ytb-IAE0 (note that the contest in the call to action has ended)
This article in the Raleigh, NC News & Observer also provides some detail www.northraleighnews.com/2010/10/31/5025/l...
Both feature my son Matthew. Matthew was born with complications at birth. He spent the first 10 days of his life at Rex Hospital in Raleigh, NC. He visited hospitals many times his first 2 years of life (he is nearly 4 ½ now). There were other AHC symptoms early on, but the primary symptom (the baffling attacks of paralysis in one or more limbs) came at 6 months, which we now know is typical for AHC sufferers). I say “now” because it took until Matthew was 18 months old for us to arrive at the diagnosis of AHC. Because it is so rare, the vast majority of neurologists do not know about this disorder. The agony we went through of knowing something was very wrong with Matthew, but not having a name for it was heart wrenching. We were fortunate to eventually find doctors here in the Raleigh area who are familiar with it. Many families are not as fortunate.
But despite our fortune in getting to a diagnosis, Matthew will continue to have a very challenging life. These attacks often can affect breathing or swallowing. In fact, we nearly lost Matthew in March, 2009. There is no known cause for this disorder, no effective treatment, no known cure YET. The only drug that has any benefit (flunarizine) is not FDA approved, and its benefit is marginal at best. Unless we discover the causes, treatments, and a cure, Matthew’s future, and those like him, is grim. The disease name refers to the disease onset; it is a permanent disorder. Some adults are able to live semi-independent lives performing menial jobs, but many require permanent full time care even as adults.
Written by AHCKIDS, published 6 months ago.
One comment for «Determination Bears Hope»
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It is amazing how I was able to see my own life in your video.
Irene, my daughter has alternate hemiplegia and she also is 5 years old.
Fortunately her crisis are not painful, for what I’m very thankful.
Irene's crisis may last a maximum of 15 days having the right part of her body paralyzed. Almost every time occurs on her right side. It only happened twice on her left side. I use Rectal Valium trying to get her to sleep. Sometimes if i don't use it immediately the crisis can turn into a very long one. However when i use it right away the crisis will be gone after she wakes up and it won t happen again shortly.
We have realized that with flunarizine the crisis last less and are sporadic.
We improved the number of crisis from 99 per year to 18 per year.
Also what worked the best for as is to keep her at home. She barely has contact with other people because just the fact of watching a kid is a crisis trigger, We keep her away from school too.
From my point of view her life is very sad and incomplete even though she has no regrets. She plays with her two brothers at home, she does logopedy at home and we have a teacher coming home as well. Only when there is no other choice we let her out of the house.
I would say that she is a very happy kid today, but the future really scares me. She is getting smarter at the time and realizing what is going on.
I have tried several times to help her adapting and live with things she can't stand, but there is no way, The crisis doesn't let her move her arm and leg, sometimes she can't hold her head up, drooling a lot and without voice.
With all my love and support.
Raquel and Irene