RACE TO END AHC FOR MIGHTY MASON

JOIN US OCTOBER 3, 2021!

MEET AT LAKE HEFNER IN MAMA ROJA'S PARKING LOT

9:30am-11:00am

We are joining AHCF’s Second Annual Race to End AHC and showing our support for Mighty Mason. It is free to participate but donations are encouraged as all proceeds go to the AHC Foundation to fund cutting edge research, family support, and relentless advocacy to end AHC. Gather with us as we walk along Lake Hefner, fly our Mighty Mason kite and rock out to music to honor our little man!

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Everyone has a story... Mason’s story is BIG and SCARY but we’re extremely hopeful for what the future brings.

Over the past few months we’ve been going through multiple tests, MRIs, CT scans, X-rays, you name it and weren’t really getting anywhere. In early November 2019, we heard a message about taking action and trusting God so we went ahead and had genetic testing done knowing the results could be unfavorable.

January 2nd, 2020 we found out that our little guy was diagnosed with a Neurological disorder called AHC (Alternating Hemiplegia of Childhood). Finding out that your child has a Neurological disorder is something we never thought in a million years we’d ever encounter. Speaking of million, his disorder is considered ultra rare and affects 1 out of 1,000,000 children. Children with AHC exhibit a wide range of symptoms. The classic telltale sign is transient attacks of hemiplegia (paralysis of a portion of the body, including the face) occur, usually affecting one side of the body or the other, or both sides of the body at once. Other symptoms include tonic attacks (lack of muscle tone), dystonic attacks (stiffening of extremities/contracting and twisting of muscles), ataxia (lack of coordination when performing voluntary movements), nystagmus (fast uncontrollable movements of the eyes that may be side to side, up and down, or rotary) developmental delays, and seizures.

Mason started suffering from AHC symptoms his first month of life. He has been diagnosed with epilepsy, has suffered from nystagmus, dystonia and had his first hemiplegic episode at 8 months old. He’s going to face and is already facing some extremely heavy situations that will alter his life in a BIG way. After all of the tears and while we still walk in fear, we look at this little guy as our hero in so many ways. His strength, his tolerance and his relentlessness is unmatched. His name is Mason Wayne Bailey and this is his life story. Lord thank you for this miracle child you’ve given us!

We ask for your help in raising funds to find a cure for AHC through the AAV Project. With the advancement of medicine and science, gene therapy is now available and has cured individuals with diseases like SMA and Sickle Cell. Unfortunately, research for gene therapy is extremely expensive and with the rarity of this disease funding has been a challenge. In January 2020, the AHC Foundation, Cure AHC and Hope for Annabel raised enough funds to start testing mice with this mutation. These organizations are hopeful to raise enough money for human trails starting in 2022. We need your help to make this dream a reality for AHC individuals!

The Race to END AHC is on! For over 25 years, the AHC Foundation has been in the race to treat or cure AHC for all our AHC kids. It has been a long race, and the foundation has covered much ground by taking many steps toward that goal. 

Through research, education, and family support, we have ONE MISSION: END AHC.

Through these three pillars of our mission, the AHC Foundation works to provide our community support and hope as we all move through this journey. Funding RESEARCH from small studies to gene discovery, to collaboration on landmark gene therapy that holds much potential; providing EDUCATIONAL resources to families through support groups, introductions to physicians, and our website; SUPPORTING FAMILIES through our support group, biennial family meetings, and availability of volunteers for crisis; are all ways the AHC Foundation works to END AHC. 

Join us in fundraising to continue to provide resources to families, fund research with high potential, and raise awareness of this rare disease.