Skye Scott, who resides in Boyne Island, Queensland, is an uncompromising woman on a passionate mission. She’s dedicated to spreading awareness and raising money to create a treatment for Duchenne muscular dystrophy (DMD), a rare, progressive muscle-wasting condition that predominantly affects boys. Her six-year-old son, Nayte, has recently been diagnosed with a life-altering disorder. This condition occurs in approximately one out of 5,000 boys. The family’s journey has garnered significant support from their local community, culminating in a successful online fundraiser that raised over $20,000 within a week.
Duchenne muscular dystrophy is linked to the X chromosome. As such, it’s much more rare in girls, only impacting one in every 50 million females. Skye’s passion for spreading awareness comes from the fact that she herself is personally affected by the condition. Through the process of learning about her son’s diagnosis, she found out that she herself is a genetic carrier of DMD. The emotional toll of the diagnosis was evident for Skye when she recently looked back on her experience.
“It’s hard to be told that your kid has this disease and there is no cure, only treatments,” – Skye Scott.
Community Support and Fundraising Efforts
The support from the Gladstone region community has left Skye and her family in awe. Friends, neighbors and even strangers across the country have rallied around them, donating over $1 million in the online fundraising efforts. The funds raised will go toward more Duchenne research, as well as Duchenne advocacy and other initiatives through the Save Our Sons Duchenne Foundation.
Skye has had a great campaign and has raised over $20,000 already! Ultimately, she was encouraged that these dollars could lead to really important, positive advancements in research. For Chloe’s family, these current clinical trials happening in Australia are incredibly promising. These clinical trials are looking at the most promising gene therapy treatments—specifically AAV-based gene replacements—for DMD. Most of these trials are still very much in development.
“I’m really appreciative for all the scientists that are out there and dedicating their lives to this stuff because I’ve never wanted to become a scientist more,” – Skye Scott.
Beyond funding research, Skye’s other goal is to raise awareness in her community about Duchenne muscular dystrophy. In the months since Nayte’s diagnosis, she has been trying to learn everything she can about the statistics and facts surrounding the disease. Her work extends far beyond awareness. She is very passionate about spreading awareness, especially educating people on all the challenges that families with a child with DMD face.
Living with Duchenne Muscular Dystrophy
Nayte enjoys losing himself in life’s simple pleasures, like having his Lego out and watching movies. His condition too frequently puts a damper on his day-to-day life. Skye understands the issues of the road ahead, her focus is on introducing Nayte to the highest quality of life possible. Her determination is an inspiration. She dismisses that concern, asserting that she’s not concerned that Nayte might one day require the use of a wheelchair.
“I just want to keep him alive and [ensure he has] the best quality of life, that’s what I’m aiming for,” – Skye Scott.
Skye’s story underscores the emotional challenges that accompany DMD. She describes the day she received her son’s diagnosis, and the realization that the news was sure to be life changing.
“I can remember the doctor saying that it’s terrible to meet under these circumstances and just thinking, ‘Oh, OK, this is huge,’” – Skye Scott.
The outlook for children with a diagnosis of DMD has changed dramatically over the decades. Families no longer have to live under the dark cloud of bad prognoses about longevity. Thanks to transformative research, the outlook is getting better every day for patients. As a direct result, many of these individuals are now living into their late 20s or early 30s.
“Those that were diagnosed 10 to 15 years ago would have been told that their sons may not progress past the age of late teens or early 20s,” – Ms Kervin.
Looking Forward
Today, with the Duchenne community aggressively pushing for more options and better therapies, Skye Scott is laying plans for her next chapter and looking forward. Her vision is a world in which no parent will ever hear the words “there’s no cure.” That booming research ecosystem is what provides her with a flicker of hope in the midst of uncertainty.
