Ciara and Billy Nichol, who live in northwestern Ireland, were overwhelmed when a cry for help went viral.
Their daughter, Ellie, suffers from one of the rarest diseases in the world, Hypomyelination with atrophy of the basal ganglia and cerebellum Syndrome, or H-ABC, which is a progressive neurological disease. As a result, Ellie has a particularly severe case of dystonia, a movement disorder, completely limiting her ability to talk or walk. H-ABC is so rare, that Ellie is the only known patient with the condition in Ireland, and one of only 22 to be diagnosed world-wide.
Yes, the entire country of Ireland. The only one!
Last year, Ellie had a procedure called deep brain stimulation to help ease her dystonia symptoms, but the outcome was not as good as her parents had hoped it would be.
She then had surgery to correct a hip displacement and when she got home, Ciara put a post on Facebook describing the jersey a local athlete gifted to her daughter. She explained that she would begin raising funds toward dystonia research that might ultimately help Ellie. Within days, the post had been shared more than 400 times and has accumulated nearly 2,000 “likes,” — and not just in Ireland. People responded literally around the globe from Australia all the way to the United States.
Billy and Ciara have been amazed at the outpouring of generosity. A former classmate of Ciara’s, who works at a granite company, even offered to raffle off a marble bathroom for the cause. Ciara describes Ellie as a “wee dote” who is very smart and looking forward to the new school year.
Meanwhile, they are continuing to look for answers. “You do anything for your child, I know it is a very rare condition, but you have to hope.”
Pass this story along to your social friends to continue Ellie’s viral success to raise awareness of dystonia.