Changes to DE medical marijuana law could help nine-year-old fight seizures
At just nine-years-old, Rylie Maedler has a much different goal than most girls her age.
“I’m afraid that I won’t get invited to parties or sleepovers, because it would be hard to keep up with them,” she said on Wednesday in a room full of legislators. “I hope you pass this bill because I just want a chance to be normal.”
She wants Delaware lawmakers to allow her to access certain forms of medical marijuana.
Back in 2013, Rylie was diagnosed with an extremely rare bone tumor in her face that was eating away at her cheek and palate. After surgery cleared up most of the tumor, she began to have serious dizzy spells. Doctors realized she had a small stroke during surgery and diagnosed her with Constant Focal Seizures.
Rylie’s mom says the medication to treat those seizures only made things worse.
“She becomes exhausted, depressed, agitated, forgetful, her bones become painful, she stops eating, her teeth loosen, her jaw joints begin to deteriorate,” says Janie Maedler, Rylie’s mother. “On these meds we’re going backwards in her progress.”
That’s where cannabis oil and Senate Bill 90 come in.
Under Delaware’s current medical marijuana law, only the plant form is an option and no one under eighteen can access it. The new legislation, which moved out of committee on Wednesday, would allow juveniles who have seizures get access medical marijuana, but only certain oil forms. This would include intractable epilepsy and disorders such as dystonia, which are characterized by involuntary muscle contractions that cause slow, repetitive movements or abnormal postures.
Legislators argue that the oil form cannot get someone high.
“To be perfectly honest with you I had some concerns about it, but that being said. I kind of took my public policy hat off and thought as a parent,” says Senator Ernie Lopez, the main sponsor of the bill. “Then I thought, I would be doing everything possible to make sure my child was receiving the best possible healthcare.”
The Delaware Division of Public Health did say their stance on the legislation on Wednesday, but that they are looking at more research about how the treatment impacts children.
“Our division fully respects and understands the compassionate intentions of this legislation,” says Karyl Rattay, director for Delaware’s Division of Public Health.
In the meantime, the Maedler family is asking for legislators to keep an open mind.
“I am scared that one day I will have a seizure and it would never stop,” says Rylie. “If I have the medicine, I think I would be almost normal again.”
Senator Lopez says they will hold the bill over their two-week break to make any minor changes that medical experts feel is necessary. He hopes for the Senate to vote in the first week of June, then move it to the House, and have it passed by mid-June.
Rylie has also started a foundation to gift children battling for their lives an iPod Touch. For more information on the cause and how you can help, visit her website.
