Ethan's Story

Ethan's Story
In June of 2007, my dad had a seizure. He was already having dementia like issues. After a couple of months at Mass General Hospital they finally had a diagnosis: Adult Onset ALD. At the time we knew of no family history. Since it is an x-linked genetic disorder we had my son Ethan tested and he came back positive. Devastating news to us, but we did have to keep reminding ourselves that we were one of the lucky ones. At least we could take measures to watch over Ethan, sadly many don't have that opportunity.
My dad lost his battle with this awful disease less than a year after his first symptoms. He deteriorated so fast, Ethan was his world, his one and only grandchild. I'm sorry that my son has to grow up not remembering his Grandpa well. And I miss my dad so much. I am grateful to him though, because of his symptoms, he saved Ethan.
Ethan is currently enrolled in the Lorenzo's Oil study through KKI. He is doing very well on the oil and low fat diet, he does hope that one day he wont have to have a" diet". He is your typical average 7 year old, loads of energy and laughter! Everyday he is an inspiration to my husband and I.
Randi Boynton