Saturday, April 30, 2016

Heartbreak and Hope


I went to Capitol Hill to fight for a cure for my movement disorder, Dystonia. My family and I went to Dystonia Awareness Days with the Dystonia Medical Research Foundation and we went to 8 senator offices. We only met one senator; we told our stories to staffers but people who had done this before assured us it was normal. I felt empowered and absolutely on fire to fight for a cure.

I met Chelsie who had  Dystonia in her neck. She did not get diagnosed for 12 years. I can't imagine that absolute frustration! I got diagnosed right away because I live near Chicago and my neurologist, Dr. Geotz prescribed a medication that has worked for 17 years. The fact that people have to wait years upon years for a diagnosis angers me! After that, they have to figure out treatments which can also take years. Chelsie is still waiting for the right treatment.

My Sister and Me

Jasmine, Chelsie, and I
Melissa has two precious little girls who have this ugly condition. As a mom, she is fighting for her girls! Melissa takes her beautiful girls to acupuncture just hoping it helps. There is no guarantee. I'm not a mother but I couldn't imagine the pain that comes with seeing your kid suffer. Ugh. HOWEVER, Melissa is a beauty queen and works her magic with her crown and sash with the senators. She works that angle well! YOU GO GIRL!!!

There was such a sense of hope and community during those two days. Everyone was so determined to tell their stories and tell their congressman why Dystonia should be on the National Health Institute list of rare diseases. If Dysttonia gets on the list, we get funding for the Fiscal Year 2017. Chelsie and her loyal friend, Jasmine did so well telling their stories and Genevieve, my little sister was great. I'm so glad Genevieve has a heart for public service. Of course, my parents were awesome too!

Before the trip, we had scheduled a consultation for Botox injections in my throat. This trip got my hopes up in a big way because everyone had some kind of success with it. Two weeks after, Mom and I go for the appointment thinking about all the possibilities. I definitely want to talk! This could be amazing!

It was not amazing. If I had a specific group of tight muscles, Botox would work but I don't. The Dystonia is all over my body and I can't talk because the message between my brain and mouth get so interrupted that I'm not a candidate for Botox. After the doctor left, I started sobbing and Mom was crying. My heart felt like it resembled a windshield after a terrible car accident. My heart was broken. I wanted it so badly. I'm crying as I write this. I was ready to have an easier time talking. It is not coming anytime soon.

This is why Dystonia needs to be cured! It needs to be cured for Chelsie who wants to put her paycheck towards furthering her education not medical bills. It needs to be cured for two little girls who should be outside playing not poked with needles.

To end on a good note, my body feels ready for the Easter Seals race on Sunday. I'm ready to tackle that extra quarter! Just a last call to donate:

After the conference, I cannot help to have a fierce amount of hope for a cure. Our passion for a cure is like wildfire. We are fearless!

I'll keep fighting Dystonia. Your job is to keep reading!


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