Doing Well

What a difference two years can make. At age three, Melanie couldn't even say "pink toe," and a typical seizure lasted at least 40 minutes; she was weak and wobbly, a frail and over-drugged waif. Now at age five, she can sit at the lunch table and tell me all about our trip to the zoo; last Friday's seizure lasted two minutes and required no rescue med; she's strong and alert, eats like a champ and wanders around the front yard picking dandelions, counting them in French. Most of her drug doses are half of what they were two years ago, and now we seem to have the hope of cannabis treatment close on the horizon.
I love to see her become more independent, developing new skills and language all the time: learning, growing and understanding more and more. She can play outside in the sun and wind (with polarized sunglasses) without being plagued by absence seizures. She can put on her own shoes and most of her own clothes. She's constantly singing, dancing and galloping around the house.
There has been an increase in some unwanted behaviors and defiance. She beats up her brother a lot, especially with weapons (like play spoons and drum sticks), and I hear lots and lots of whining.
We're working on finding the right school placement for her next year, and I'm looking forward to the daily social time for my little social butterfly. She will benefit from the structured time of learning, growth and play, and James will benefit from the break from the beatings. The kids love each other very much, but poor James just needs a little space.
I thank the Lord daily for her health and safety and development, and I pray she is spared the regressions typical of Dravet, or worse, "The" seizure that always seems to come out of nowhere to steal away skills or even life.
Praise God with me for the gifts and blessings in her life and the joy and blessings she brings to the lives of everyone around her.

HELP!! Big hope for Melanie!!

LISTEN UP!! BIG NEWS!!

I realize many of you do not live in WI, but please read this and share with ANYONE you know in WI, and keep an eye out for movements in your own state.

(If you know about why we want medical cannabis for Melanie, you may skip down to the paragraph marked with **)

In states all over the US, there are movements towards legalization of medical marijuana- or cannabis. Many of these movements and bills being authored, sponsored and passed are being spear-headed and fueled by parents of kids with Dravet Syndrome, just like our little Melanie.

The inspirational family and the poster child for this movement, particularly in the world of Dravet and severe seizure disorders, is the Figi family in CO. Namely, 6-y-o Charlotte, who has a cannabis plant named after her, Charlotte's Web. If you don't know her story: see this CNN documentary, called "WEED" https://www.youtube.com/watch?v=Qw4LMXTb26o, or watch this fantastic 18-minute synopsis of the story and the case for cannabis for treating seizures: https://www.youtube.com/watch?v=ciQ4ErmhO7g (Josh Stanley TED talk in Boulder, CO). If you check out either of those videos, you will see why this option is so appealing and exciting for families like us with children like Melanie.

Many of you know the basic gist, but for those who don't, know that Melanie would receive this medicine in an oil form, produced from a plant like Charlotte's Web in another state, and it would be mailed to our prescribing doctor in WI and dispensed to us from their office. This plant is bred to be extremely high in CBD, the medicinal element, and extremely low in THC, the psychotropic element. These kids do not get even a remote high. She would take it from a syringe, like her other liquid meds. There is tremendous potential for efficacy here, and a promising possibility of drastically tapering or even eliminating the dangerous meds she's on now.

**So, you're wondering what I was talking about, getting this oil from a WI doctor... first you've heard of this? Well, THIS is the point of this email, and the reason it is targeted to our WI friends. There is a bill in the state legislature right now, which was passed strongly through committee, with bi-partisan support, which would legalize the use of CBD oil for the treatment of seizures in WI! This is not the blanket medical marijuana bill: this is very specific and has much more traction and support.

I spoke with a mom who is helping to fuel this action, Sally Schaeffer. She lives in Burlington, and her daughter doesn't have Dravet, but a chromosome disorder which causes 80% of her sleep to be plagued by seizures. They were featured in a story on Channel 4 News recently, which can be found here: http://lovinglydia.com/ She told me she knows of at least two state legislators who have changed their minds on this issue BECAUSE OF ALL THE LETTERS they have recieved from constituents. There is a time crunch now, as the legilative session ends very soon. So PLEASE help us out, and make some noise! Especially in northern WI- we need more voices up there! Share this with friends and neighbors!!

I have attached a form letter which you are more than welcome to use and share with anyone and everyone you can think of in the state. Also, here is a link to find your state legislators: http://legis.wisconsin.gov/pages/waml.aspx

Please write your representative, senator and Gov. Walker. This is of utmost importance to Melanie and many other suffering kids in WI!

 

Dear ____,

I am writing to you as a constituent regarding AB 726 which would allow for the legalization of CBD oil, which is extracted from a medicinal cannabis plant, for the treatment of seizures. This oil is intentionally non-psychotropic with extremely low levels of THC and has proven to be successful in stopping or drastically decreasing epileptic seizures in children. I am asking you please to consider thoroughly reviewing and supporting this bill as it moves forward in this legislative session.

I am a friend to Milwaukee parent Claire Johnson, a devoted mother of a 5-year-old special needs child, Melanie. Melanie has Dravet Syndrome, like many other children in the US whose seizures are being treated successfully using CBD oil. Paige Figi, of Colorado, came to Wisconsin to testify before the committee of Children and Families last month, regarding AB 726. Her daughter, Charlotte has Dravet just like Melanie, and her story is the inspiration of so many parents fighting for this treatment to save their children’s lives. Please take 18 minutes to view a well-delivered, informative and touching explanation of the case for treating seizures with CBD, focusing on the miraculous story of Charlotte Figi: https://www.youtube.com/watch?v=ciQ4ErmhO7g (Josh Stanley, TEDxBoulder). Like many other severe epilepsies, the seizures in Dravet syndrome typically respond very poorly to most drugs on the market, and the side effects are dangerous, detrimental to development and even deadly. The seizures themselves are most certainly dangerous, detrimental to development and too often deadly. High-CBD cannabis plants like Charlotte’s Web are highly effective, carefully tested and without side effects.

I understand that the committee of Children and Families voted yes on this bill on February 26th at their executive meeting, which will move this bill forward. I urge you to vote in favor of this bill for the sake of the children who could benefit so greatly from treatment with CBD. Many parents are out of options or will be very soon. Many young and precious lives are hanging in the balance. I cannot imagine a more urgent item for this legislative session than to see to it that these children can have legal access to something which can help them.

Thank you for your consideration. I look forward to hearing from you about your support for AB 726.

Sincerely,
Your name Address, phone & email