I know, I know……it’s been awhile.
Life out here in Colorado has been busy for a whole host of reasons. Most importantly, I’ve been spending every spare minute trying to get Maddie’s medicine legalized in NC. The fantastic part: we are actually getting somewhere. On Thursday, HB 1220 passed the NC House 111-2! Only two days prior to that, we were concerned the Bill might not even get heard this session.
We enjoy Colorado Springs. It is a beautiful place. We joined a pool along with our friends, fellow North Carolinians, the Morleys, who moved here for their daughter Mia to be treated with Charlotte’s Web. We spend as much time as we can there, but it just isn’t the same. Maddie loves the beach. I can’t help looking back at pictures of her from her last summer.
Those are all from last summer at Figure Eight. Even though we were getting ready for brain surgery, we love our time at the beach.
A few more, from after her surgery, when her incision has healed enough that we could allow her in the sand and water.
This is the thing. This medicine works. I will stay here forever so that she can continue this treatment. But we SHOULD NOT have to. This is not something people need to be afraid of, it is not something to be threatened by. Our sweet girl has 80% less seizures per day on average despite reducing one of her seizure meds by 40%. She is learning so much. It isn’t easy or fast, but she is actually maintaining her new skills for the first time since she was two. When she learns something, it sticks. That has not happened for five years. Unless you have seen it in your own child you cannot imagine how hard it is to watch them have to re-learn the same things over and over and over again. Never knowing if we can ever get past the simplest concepts.
Maddie deserves to get to live at home with her Dad. We miss Brandon. We miss him so much. He was here last weekend for the first time in two and a half months and those 4 days were amazing. But our kiddo deserves better than that. She has been through so much. She should be able to live at home and use the medicine she needs.
If you agree that she should be able to live at home in NC and still use the CBD oil which has so greatly reduced her seizures and helped her begin to develop again, if you live in (or have family in) North Carolina, we would love for you to email your NC Senator. We are extremely hopeful that the Senate will take up our bill and pass it though the Senate with the same type of support that we saw in the House. But we have been warned that our short legislative session for 2014 is about to draw to a close and that they may want to wait and address this in January.
To find your NC Senator, click on this link, scroll down to the second map and enter your address. Once your district pulls up, click on the link to that seat’s page and your Senator’s email will be right there. Please shoot them a quick, polite email about why you support HB1220. It can be something as simple as, “I have followed Maddie Gorman’s story for a long time and I hope that you’ll allow her to receive her CBD oil treatment here in NC”. If you want more guidance as to how to write the email, comment below with your email. I won’t publish it and will just send you a template email.
6/22 Edited to add: For those of y’all not already familiar with our advocacy in NC and the bill, here it is. This is NOT a medical marijuana bill, it simply allows for a non-psychoactive oil extract to be used for intractable epilepsy, when recommended by your Neurologist.
Thanks for your support and for caring about our sweet girl.
Love to everyone,
Liz, Brandon, and Maddie