At nearly 3 years of age, Morgan Jones can’t crawl, speak, chew or even lift her head, and her tiny body is frequently racked by seizures.
Amanda Houser, 9, takes numerous medications daily and sticks to a brutally restrictive diet that has helped control but not eliminate her seizures — for now.
Both girls have Dravet syndrome, a rare form of epilepsy marked by severe, hard-to-control seizures. The condition is incurable, and people who have it frequently experience developmental delays, language and speech problems and other effects.
The parents of both girls — like the families of such children nationwide — want to try a new treatment, an oil derived from a specially cultivated marijuana strain grown by six brothers in Colorado. But because medical marijuana remains illegal in New York, both families are tantalized by a treatment that seems so promising yet so out of reach.
“Why is a very effective form of treatment being denied to our daughter?” asked Deane Houser, a Suffern resident who is considering moving all or some of his family to Colorado to get his daughter treatment. “Why should we have to move to get this medicine?”
– Read the entire article at Star Gazette.