From WFAA – watch video here.
Chris Blanchett can only hold his 14-month old daughter Ellanor’s hand, and hope she’s not in any pain, while she has a seizure.
Ellanor was born with a rare seizure disorder called Aicardi Syndrome. Her condition is so serious, most of the right side of her brain was removed in January in a surgery called a partial hemispherectomy.
Yet, even that drastic and desperate action didn’t stop the seizures from coming, sometimes half a dozen times a day, and causing more brain damage.
In a last ditch effort to improve her condition and lesson the number of seizures, the family is traveling to Oregon to try cannabis oil, a form of medical marijuana. The drug trial is being offered by MxBiotech, a company that specializes in cannabinoid research and development of cannabis-based medicines.
The Blanchetts are hoping for the sort of improvement, including a reduction in seizure activity, that has been seen in other patients.
“Being able to use her hand,” says mom, Sabrina, “Or one day being able to walk is what every parent hopes for their child, right? We want to do what’s best for her and what might benefit her.”
The cannabis based medicinals will be provided by the program, but parents will administer the treatment. The medicine is in a coconut oil and administered orally in very small doses. Patients do not smoke marijuana as part of the program.
“Sure, we may have questioned the cannabis oil at first,” admits Chris, “But that’s what we want to try now. And until you’re in our seat, you don’t understand what that decision means.”
Sabrina has written to many lawmakers, urging them to legalize medical marijuana in Texas. Twenty-three states and the District of Columbia have already legalized medical marijuana.
The Blanchetts are hopeful that cannabis oil will work. But if it does, they will face another tough dilemma, to move to a state where treatment for their daughter is available and legal or move back to Texas and watch Ellanor regress back into pre-treatment seizure activity.
For more information about Ellanor and the journey of the Blanchetts’ “warrior princess,” go to the family’s blog.