Monday, September 09, 2013

Hopeful Treatment for Epilepsy

Have you met Emilie and her son Connor? Emilie is one of those tiger moms who will win your heart. Her son Connor is absolutely beautiful. He is also autistic and epileptic. Trust me when I say that when you meet Connor your heart will melt; he is an incredible spirit wrapped up in a gorgeous package.


See? Gorgeous.

I happened to run into Emilie in the Detroit airport, of all places, this summer. She and Connor were returning home after more than a week spent in a cutting edge hospital. Connor had undergone test after test. Imagine your small child having to fast for days, hooked up to monitors and machines, poked and prodded, and under constant medical care. Connor and Emilie are troupers. Every day Connor uses a lot of medications with severe side effects to try to keep him from seizing. I can't imagine my baby dealing with these challenges, but Connor is amazing.

Emilie needs our help in a different way. She doesn't need your dollars, she needs your attention. A new treatment for epilepsy is garnering hugely positive results. In double-blind clinical studies, it's working so well that epileptic children have been able to start progressing and developing again. There's just one thing: it's currently illegal in the state of Utah. The medicine is cannabdiol, or CBD. It's extracted from an extremely high CBD, low THC strain of cannabis nicknamed “Charlotte’s Web” (named after a girl who was treated with this medicine.) This makes it illegal in Utah. It is taken orally as an oil, and has virtually no THC which means it cannot make you high. It's a treatment, not a cure. Doctors are seeing a 50% decrease in seizures, which is huge.

Emilie and other epilepsy moms have proposed a bill for the Utah legislature that would allow children with severe, intractable epilepsy, like Connor's, to be prescribed and treated with this medication. The bill is narrow; it is not an initiative for medical marijuana; it includes ONLY the high CBD oil for use in epilepsy. The medication would be used under the supervision of the neurologists treating the children (the neurologists support this legislation.) There's been a lot of support from legislators on both sides of the aisle. The sponsor of the bill is a well-respected conservative Republican.

So here's what's next:

Public Information Meeting
Tues, Sept. 10th 6:00pm - 8:00pm
Utah Valley University Sorenson Student Center
Room 206a
800 West University Pkwy

If you're interested in knowing more about legislation, "Hope for Children with Epilepsy," interested in helping get the word out, or want to talk to other moms and families who are dealing with epilepsy and what this bill would mean to them, this is the meeting for you. Attending will mean that you'll be able to write your legislators in support when the time comes.

This is a big deal. Every day that passes these children are deteriorating because of constant seizures. Emilie is hoping to have the bill go through during the next session in January. You can make a real difference.


Barb said...

I cannot attend, unfortunately, but I have heard of this treatment and I'm so excited to see a bill on it come before the legislature. I actually used to work for the Speaker there and still have some connections. Please let me know if can be of help when the time comes for a specific lobbying effort.

Miggy said...

There was a great article on CNN about Charlotte her family and the AMAZING results.

OK--found the article here:

If anyone is skeptical you should really read it...quite amazing.

Wish I could attend. I don't know how many Utah readers I have, but I could put a blurb on my blog--very important information to get out.