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!

#AHC #disabilitiessuck #sweetchildofmine

With funds raised from the AHC Foundation, we will support AAV gene therapy and other research related to the project.  We believe a path has been identified to a viable permanent treatment: gene therapy.  The gene therapy we propose will involve inserting a functional copy of the ATP1A3 gene into a virus (an adeno-associated virus or AAV) that has been stripped of its harmful payload and its ability to reproduce. The virus will then be injected into the cerebrospinal fluid and will carry the functional gene to the cells in the brain that are failing. By delivering additional functional copies of the gene, we should be able to rescue those cells, and treat the disease permanently. 

Learn more about the project here.