Hello friends and thank you once again for joining us this month! I hope everyone has enjoyed their summer and that the kids are enjoying school. Time sure is flying by for everyone! Kyle is entering 7th grade and Liam 4th, my babies are growing up. Soon November will be upon us and that means Epilepsy Awareness Month! What will you be doing to spread awareness?
This month we are going to share another reason as to why someone may be suffering from epilepsy. This is a disorder that also needs more awareness and we are honored to share this young mans story!
Everyone please meet Matthew:
Imagine your child
Was CRIPPLED by a mysterious disorder that left him paralyzed for minutes, hours, even days at a time…the mental anguish of hearing your child say “bye-bye arm”, the physical injury you endure carrying him when he goes limp suddenly.
Was ROBBED of his or her childhood and future. Instead of soccer, baseball, and karate, your child goes to OT, PT, Speech, and numerous doctor visits. Imagine hearing your child will at best barely attain an 8th grade level education. Instead of planning for college & helping him shape a career, you’ll be planning for his care & doing your best to teach him basic life skills.
Is IMPRISONED FOR LIFE trapped in a body that won’t work right, and a mind that won’t let him flourish, all because of a disease? How would you feel knowing your child will be forced sooner or later to live in group homes or institutions?
My wife Renee & I don’t have to imagine. These are realities for our 6 year old son Matthew, as he suffers from a rare disease called Alternating Hemiplegia of Childhood (AHC). He was born with complications & spent the first 10 days of his life in the NICU of Rex Hospital in Raleigh, NC where we live. The doctors originally thought he had epilepsy. This is one of the challenges with AHC. The symptoms of AHC can look like other diseases, such as epilepsy or cerebral palsy. While there are only approximately 800 cases identified in the world, there are probably thousands undiagnosed (based on 1 in a million current ratio extrapolated to world population yielding 7000, not 800). It took nearly 18 months to diagnose Matthew because of the lack of awareness about this disease. Researchers recently isolated the genetic mutation responsible for the majority of AHC cases (including Matthew), so there is renewed hope to find these undiagnosed cases & help drive the research towards some effective treatment or indeed a cure.
To make matters worse, about 50% of AHC sufferers do have true epilepsy. Matthew is one of these. In fact we almost lost him in February, 2009 to an epileptic seizure. While he has been seizure free since then, he suffers bouts of paralysis nearly every day, and is at least 18 months delayed in most developmental areas. Since that traumatic event in 2009, we made the decision to do whatever we could to get some answers for this extremely rare, debilitating neurological disorder. Recently we, along with some other AHC families and business professionals, created Cure AHC to work closely with Duke University (who first discovered the gene mutation that causes AHC). The global research collaboration they have facilitated, combined with Cure AHC’s push not only for awareness and funding for AHC, but for rare diseases in general, have already produced dramatic results.
In January, 2011 Matthew also developed Type 1 diabetes. All these issues have not dampened Matthew’s spirit or determination, however. Matthew tries his hardest to overcome the significant physical, learning, and behavioral disabilities that come with AHC. We are hopeful that with the right funding for research, we can help Matthew & his friends to conquer these challenges, so that AHC no longer will rob its sufferers of a normal life. Thank you for helping us make this happen for Matthew. Jeff & Renee Wuchich
Thank you all for taking the time to read about Matthew and to learn a little bit more about AHC. If you would like to learn more about what Matthew’s dad Jeff is doing to raise awareness for AHC please visit http://cureahc.org/.
As always we are looking for Fighters for future months. We are looking for children, teens and adults. Please note that we do not have to share photos or names to protect your privacy. Also, we are looking to share stories of caregivers. Please email Rose@karefoundation.org to share your story!