ANDERSON COUNTY, SC (FOX Carolina) - A family in Anderson is asking for your help to get their message to the FDA.

These are the two teens who are wheelchair bound with a rare disease and they believe that there is hope in a drug that is in clinical trials.

They believe could add time to their lives and they hope that you will help share their message.

This disease targets the motor functions and make even picking up a glass of water difficult, but for 14 year old Morgan and 17 year old Dawson... They aren't letting it stop them from spreading the word to help kids like them have a better life.

The smiles on these Anderson teens faces were hard fought as they battle FA, a rare debilitating, life-shortening, degenerative neuro-muscular disorder.

"I have to modify getting around my house, going to the restroom or anything like that is pretty difficult for me it’s the small things small simple tasks," Morgan Swaney says. She's a 14 year old battling FA as a Palmetto High School.

Even after losing their ability to walk when they were younger, they are determined to keep making memories with what they do have.

Morgan says "that [it] was really difficult to watch everyone else be capable and me losing that capability. I’ve seen things get taken away from me like ballet, gymnastics and dance and stuff but over the years I’ve watched all of that be taken away from me by my disease. It’s really hard on me, but I try to live day by day for some days it gets hard."

Morgan's mom Danita says they trust the science behind a drug in clinical trials and believe that it is their best chance at a better life for Morgan and her older brother Dawson.

Danita, Morgan and Dawson's mom, says, "there is enough documentation that we feel we would put our children on it and Morgan would take it in a heartbeat so we feel like it is safe enough we just need the borders in order to get that."

They need the community to sign the petition by January 20th at 5pm. 

says, "We know what our future is supposed to look like. We have read the statistics, we know what is supposed to happen. We are trying to rewrite it."

In the meantime, they are in a few clinical trials at the University of Florida. This family admits it's hard, but they are hopeful. COVID has slowed down some research efforts, but they are optimistic.

Morgan says that, "my main goal is next is to drive and if this disease keeps progressing and getting worse I don’t know that it is in my future."

Dawson is preparing for college.

They believe the medicine will help them have the life they deserve.

The link above takes less than 30 seconds to complete and they hope you'll join the almost 50,000 who have signed up.
 

This is one of the most recent posts from on Facebook:
 
Reasons for a treatment...will you take 30 seconds to help Dawson get a much needed medication?
Only 6 more days...WIll you sign this call to action so all these folks can have a drug to improve their rare disease? They are part of our FAmily!
I feel compelled to ask anyone who have met my children to help them out.
I am asking anyone who knows the struggles Dawson and Morgan face to sign this call to action. We are trying to get a drug approved for them to battle this disease. It has shown great results in the trials but the FDA has yet to approve. Time is not on our side. We don’t have time to do another trial. Would you be willing to do it? Every person counts. Please read more below:
It will only take a few minutes.
They need a drug that has not been approved by the FDA. The drug will slow progression.
We need your signature on this call to action. By signing you are helping them and other people with FA directly.
I encourage you to read the following information, but for those of you who have limited time go straight to this link:
Friends, Dawson and Morgan and others who suffer from Friedreich's Ataxia (FA) need some help. Right now! Today!
If you have ever asked what you can do to help--this is it. In short, there is finally a drug to help treat FA (there is not one currently nor a cure). However, they have no access to it.
Even though the drug has shown promise and essentially slowing progression and keeping it constant, it has not been approved by the FDA.
We don't have time to do another trial. Dawson and Morgan need this drug. If you have seen them, you know their progression is moving right along and they are losing abilities daily.
It only takes a few minutes to sign this call to action. It will be sent to the FDA and drug manufacturer. Time is of the essence. Would you do this for us? For my children? For all FAmilys?
I would also encourage you to watch the webinar for more information or even fast forward to hear the stories of the People whose lives have been changed on this drug. It is beautiful and I want my kids to have the same experience.
FARA is organizing a campaign to move an important drug forward and we’d like for you to consider signing a letter in support. Also, please share this post (copy and paste this message) if you feel it’s appropriate.
Over a year ago, Reata Pharmaceuticals, Inc. announced results from a clinical trial that their drug, omaveloxolone, was very safe and not only stopped the relentless progression of Friedreich’s Ataxia, but even restored some lost function. This was amazing news! Tears flowed and many hugs were exchanged.
Last month, the U.S. Food and Drug Administration indicated that it wanted Reata to do another clinical trial to corroborate these data. Nothing unusual here; FDA usually requires data from *two* trials in order to proceed to approval.
Please visit the site below, view the letter FARA has put together, and consider signing your name as a friend to the FA community. It will be available until January 20th, and we plan to submit our letter to Reata and FDA in early February 2021.
As always, thank you.
 
 

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