The last 3 years have been a rollercoaster for 7-year-old Michael Bentley and his parents Tim and Holly. Michael is fighting a severe form of epilepsy.
“Two years of his life are gone, because he couldn't remember anything. Because he was having so many seizures daily,” Holly said.
For the past 2 years Michael has been part of a medication trial at Oishei Children’s Hospital. Doctors were testing Epidiolex. It’s an oil that’s taken by mouth. The oil is made from cannabis, an active component of marijuana which reduces the frequency of seizures.
After the first week of taking the medicine, Holly said she saw a huge difference with Michael.
“Epidiolex was the only one that controlled all the seizures Michael was having,” Holly said.
Just for days ago the FDA approved the drug. However, it’s still illegal in New York and several other states. New York Assemblyman, Sean Ryan and State Senator, Chris Jacobs are calling for Governor Andrew Cuomo to sign their bill, which would no longer make the drug a crime.
“I’ll allow New York State to act quickly to follow medication that are approved by the FDA,” Ryan said.
7 Eyewitness News reached out to the governor’s office and we are still waiting for a response. Meanwhile Holly believes this medication was the saving grace for her little boy and she’s hoping the governor signs.
“We would all like to see this pass, so it can potentially help all others who have Michael’s form of epilepsy,” Holly said.
Doctors say the drug does not contain thc that's found in marijuana.