As many may know my youngest daughter Madelyn June (MJ) has a very rare neurological condition called Alternating Hemiplegia of Childhood (AHC). AHC is a very complex condition that currently has no cure. To learn more about AHC please read this link (http://www.raredr.com/news/silver-ahc). MJ turned four years old January 11, 2017, and with assistance she is able to walk! Within the last year, MJ has made great progress, her vocabulary has increased to 15 words, she has a picture book she uses to communicate with, and we hope to see her fully walking by five years old.
Unfortunately, because of her development delays she is unable to participate in basic exercise activities like walking, running, swimming, and riding her own bike with children her age. As a parent, this is very difficult to watch, and hope that advancements in research pave the way for treatments and medications that improve her condition. Specifically, because AHC is such a rare condition (~6000 diagnosed) drug companies do not consider AHC medications to be a profitable venture. We desperately need to fix this so those with AHC have access to FDA approved medications.
To help raise funds for those with AHC, two very exciting events have been planned!
1) April 13th, 2017 @ 6:00 pm Blue Sky Endurance in Mt. Pleasant SC will host a 5K fun run/walk with MJ. I will be there with MJ, along with the Blue Sky Crew, and together we'll have fun running or walking through old-town Mt. Pleasant. Trust me, the sunset is amazing!
2) April 15th, 2017 @ 9:00 am MJ will be participating the Kiawah Kids Triathlon! Yes, that is correct, she will be a real participant in a special division created just for her. Thanks to the folks at Kiawah Island Golf Resort, MJ will be the first child with AHC to become a triathlete! Come watch and cheer!
Via this website, at any time an online donation can be made to the Alternating Hemiplegia of Childhood Foundation (http://ahckids.org/). All donations will go directly to AHCF. AHCF is a small but amazing group of people who support AHC families worldwide and raise money that funds research.
Lastly, if you attend one of the two events (April 13th or 15th) and make a $50.00 online donation you will receive an AHC t-shirt, or you if you attend one of the two events and make a $25.00 online donation you will receive an AHC wrist band!
Thank you, and together let's raise funds to end AHC!