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RARE Patient Stories - 'Meet Matthew!'

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1.5 from 4 votes
Friday, February 24, 2012

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. Imagine these conditions were permanent, and as an adult your child would at best only live a semi-independent life and would most likely need full time care. 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! My son Matthew is one of them.

You can see more about his story through YouTube http://www.youtube.com/watch?v=4F3qk9qT-tU. To summarize, Matthew is inspirational in that he, despite the substantial obstacles AHC throws his way, is determined to learn, to play, to be as "normal" as his friends. This from a 4 1/2 year old would be remarkable for a typically developing child, much less one with the challenges of AHC. That is why I am so proud of my son, and am leading the charge to cure AHC.

We are on the verge of getting at the root cause of this disorder. With the successes other rare diseases are seeing, we are hopeful that we can discover a cure or effective treatment in time for Matthew to benefit. We also hope his story helps us find the likely THOUSANDS of undiagnosed cases in the world (with the ratio of 1 in a million, we should know of 7000 approx vs. 700). As many AHC sufferers also have epilepsy (including Matthew) we also hope our efforts will benefit many others.

Jeff Wuchich

North Carolina

Source: RARE Project
1.5
1.5 from 4 votes
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