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."
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.