Near the same time I started using a wheelchair full-time, in 2016 to 2017ish, FARA (Friedreich’s Ataxia Research Alliance) was working on some clinical trials that seemed promising. I started to think that maybe the wheelchair was only temporary, that I could dance again, that I can walk down my wedding aisle someday… but that all changed when the FDA did not approve. My heart broke into a million pieces that day, but I never told anyone that; not my parents, brothers, or friends (although I’m sure they sensed it).
I never liked to show sadness to others, or cry in front of people. It was unhealthy at the time because I kept everything bottled up, now I’m definitely more open about my feelings but still will not be sad around others. But that day when the news broke, there was one that really felt my heartbreak. That was my dog, Bella. It was obvious she knew I wasn’t myself because she snuggled with me for a couple hours. After that day, I internally questioned if there was going to be a cure one day.
Sorry if that put a downer on you but here’s a cute photo of Bella sleeping to make up for it LOL!
However, I have always been a believer in things happening for a reason, and so I knew if that trial was not meant to work out, there’s going to be something better coming. And guess what?? It’s here! FARA recently spread the good news that the Omaveloxolone drug has proven to positively impact FA abilities, more or less significantly than others; never worsening them. Basically Omav helps our decreased frataxin levels by being some sort of activator for it… look I’m not good at the doctor talk but you get the idea. This news is all recent so no FAers have access to the drug right now unless they participated in the clinical trials. The FDA has to approve it first in order to give us access. The FA community’s job this past week has been to sign a letter to the FDA and Reata Pharmaceuticals stating why we want to have access to the drug (I also thank family and friends who signed!!) and this is a lil bit of what I wrote:
“Even the slightest change in our health will make the biggest difference in the world… and I’m here to tell you why, this life-altering disability had immensely affected my emotional health, as I’m sure it has for every single FAer out there. However I have also become so strong-willed and optimistic that I acquire so much hope that there will one day be a medicine that can help us FAers and it’s finally here! So I ask that you please consider the physical and emotional health of thousands of FAers around the world in your decision.”
Why am I blogging about this?? Well, I like to keep everyone updated since I know people are always curious if there are any treatments for FA, whether they have asked me or not. This is another step, actually a really big step towards curing FA so let’s cross our fingers it gets approved. Yes, I know, the Omav drug will not cure me completely, I will still be using a wheelchair. However, with this drug, things will become easier for me like standing up to reach for a snack in the cabinet, getting less fatigue when I’m out with friends, and much more.
It’s 2021 and I still have that dream of dancing again or walking down my wedding aisle someday, but the only difference is that now I’m completely okay about those being simply just dreams. There’s more to life than walking, and I know that can be difficult for some of you to understand. Yes, don’t get me wrong, it sucks sometimes but it’s really not the worst thing in the world. I’m still doing things I want to do like attending and living independently at a college that I love, pursuing my love for fashion as a career, having memorable times with family and friends, writing a really cool blog, and so much more. I don’t know what life is going to bring me in the future, but in the meanwhile, I’m gonna have a hella good time enjoying it!
PositivelyAdri 
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