Guest Blog: AHC Foundation President Jeff Wuchich

We've never done a guest blog before, but I think many of you will understand why we've chosen to do one for Jeff.  His son, Matthew, has Alternating Hemiplegia of Childhood (AHC) which is a very rare neurological disorder and its cause is not known.  Like SMA, there aren't any effective treatments and there isn't a cure.  Getting funding for so-called "orphan" diseases is very hard.  We've seen how hard it is with SMA.  But at least with SMA we know the cause is genetic and research is going towards finding treatments and, ultimately, a cure.  The AHC Foundation is trying to win a $250,000 grant in the Pepsi Refresh Project to determine if the cause is genetic.

This is Matthew.

I'll let Jeff explain more:

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 650 or so cases have been identified in the world!

This 3 minute video provides details as does this article in the Raleigh, NC, News & Observer.

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 3 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 of 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. 

Research has been ongoing for several years, but funded solely through the AHC Foundation by families with afflicted children doing grass roots fundraisers.  That is why we are striving so hard to win the $250,000 this month on Pepsi Refresh.   Our idea is simple, straightforward, and ambitiously hopeful at getting to the root cause of AHC.  The project will perform a full genome sequencing on a sample population of AHC patients in the United States.  From this process, we should have identified common genetic mutations.  We will then be able to screen the other AHC patients for the identified mutations & arrive at the root cause of AHC, or at the very least eliminate genetics as a root cause if none is discovered.

We are grateful for any support you can provide to help us win this grant.  We certainly do not want to take focus away from efforts to cure SMA, but as previous winners, you understand the enormity of the task we face.   Thank you for your support.  Easy voting details are below.

Please do all of these each and every day through November 30th!

1. From your computer:

Go to http://www.refresheverything.com/cureahc and click on the VOTE NOW button.   Follow the directions.  Make sure you hit VOTE NOW again after logging in.

2. From your mobile phone:

Text 104112 to 73774 (73774 is in the “to” field; 104112 is in the body of the message)

3. Please share with everyone you know!

Email me with any questions jeff@ahckids.org

Thank You!

Jeff Wuchich, AHCF President

So please take this opportunity to help Matthew and families like his in their battle against AHC.

Thanks!