A look back at 2017 Lights for Lives
Aidan is a 4th grader at Stratham Memorial School who has Hunter Syndrome which is a rare, progressive, genetic disorder that impacts all parts of his body. Proceeds from Lights for Lives 2017 will go to support research for a cure for Hunter Syndrome.
ACTION FOR AIDAN
Our story begins at Aidan's 15 month well child check-up. Until Aidan's 15 month appointment, we had no reason to suspect anything was wrong with our son. I remember when Aidan was born - asking Tripp in the delivery room "Does he have all his toes and fingers??" How naive I was to assume that that Tripp's "yes" meant everything was OK with our beautiful boy.
Our pediatrician suspected Hunter Syndrome, given a constellation of symptoms present at Aidan's 15 month appointment: macrocephaly (large head), bilateral inguinal hernia repairs, a new umbilical hernia, recurrent upper respiratory infections, and gross motor delay at 12 mos - Aidan didn't crawl until 13 months.
After meeting with a geneticist the following week, Aidan's diagnosis of Hunter syndrome was confirmed. The date was November 6th, 2009. Our first visit with our geneticist will forever haunt me. Tripp and I were plunged suddenly into a world of grief, anger, fear, disbelief, and overwhelming sadness.
The weeks following Aidan's diagnosis were a blur of ultrasounds, cardiac echoes, brain MRIs, skeletal surveys, and more blood work. Piece by piece we learned of how Hunter Syndrome was affecting Aidan's bones, spine, brain, hearing, liver, spleen and more.
Since diagnosis Aidan has had 11 surgeries, seen over 10 specialists, and been to more physical therapy / occupational therapy /and speech therapy than I care to admit. He continues with weekly four hour infusion therapies. The enzyme (Elaprase) which he 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.
Our hope is to find adjunct therapy to enzyme replacement therapy, or if we shoot even higher, a definitive cure.
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. Thank you for your help.
More info: actionforaidan.org