Week 9 of #52weeksofgiving Action for Aidan

For this Weeks Giving Tuesday, Week 9 of #52weeksofgiving, Michelle had the pleasure of connecting with Aidan’s Mom to hear about Aidan’s journey with Hunter Syndrome. 

Aidan  of Stratham, N.H., was diagnosed in 2009 with Hunter syndrome — a disorder affecting only 1,500 children worldwide, almost exclusively boys. 

In Hunter syndrome, the body's cells lack an enzyme. Without the enzyme, the cells in the body cannot breakdown a specific product: glycosaminoglycans. GAG's are toxic to the body. As the GAGs accumulate, they cause damage throughout the body. This damage manifests as breathing problems, hearing loss, weak tooth enamel, enlarged tongues, enlarged livers and spleens, defective heart valves, skeletal deformities, short stature, hydrocephalus, macrocephaly, nerve conduction problems - and in 75% of children, progressive mental retardation. 

Since the diagnosis Aidan has had 11 surgeries, seen over 10 specialists, and has seen multiple different physical therapists, occupational therapists and speech therapists. Aidan receives weekly four hour infusion therapies. The enzyme (Elaprase) Aidan receives every week, has ameliorated some aspects of the disease, but it is not a cure and many aspects of the disease have continued to progress. Aidan and his family have traveled across the country to California to take part in clinical trials. 

Action for Aidan will raise the money imperative towards furthering research and ultimately finding a cure for Aidan, and the other innocent boys worldwide affected by this unfortunate disease.

To learn more about Hunter’s Syndrome and to cheer Aidan on throughout his journey follow @actionforaidan or check out www.actionforaidan.org