Meet Leona Luke: a 46-year-old mum from the Gold Coast suburb of Tallebudgera. She’s a passionate businesswoman, a devoted mother to two children and a wife to her husband, EJ. While her life seems like it’s all about family and fulfilling her everyday roles, Leona’s journey has been anything but typical. In fact, she’s faced more than her fair share of challenges, which are starting to affect her daily life.
Leona’s story begins in her late teens when she first began noticing something wasn’t quite right with her body. At 18, during a gym class, she struggled to lift her foot, something she knew wasn’t normal. Leona’s mother had also experienced unusual symptoms that led to several misdiagnoses over the years, including multiple sclerosis. But nothing seemed to quite fit.
By the time Leona was in her 20s, the warning signs became clearer. She began to experience wastage in her legs, a sign that something was slowly affecting her muscles.
After years of misdiagnoses, Leona and her mother found a neurologist who finally gave them the answers they had been searching for: both of them were diagnosed with Facioscapulohumeral Muscular Dystrophy (FSHD), a progressive genetic disorder that weakens muscles over time.
“I knew something was wrong when I was younger, but I just wasn’t ready to face it,” Leona reflects. “It wasn’t until my late 20s that I really started to look into it more seriously.”
A Family Legacy
The diagnosis of FSHD also answered many questions about Leona’s health history. She discovered that FSHD is hereditary and that her children were at risk of inheriting the gene. But for Leona, it wasn’t just about her. It was about giving her children the best future possible.
“My children were conceived through IVF and we were given the chance to test the embryos genetically. The technology to do that wasn’t as advanced back then, but it worked. We had such a high chance of passing this terrible disease on,” she says. “Thankfully, neither of my children have the gene. Seeing them run and play and live their best lives brings me great joy. The majority of my embryos were affected by FSHD, so I feel very blessed to have had such a great outcome”
FSHD can vary greatly from person to person—while some individuals may live with the disease for decades without experiencing severe symptoms, others may face more debilitating challenges. For Leona, it’s a daily reality that is slowly but surely taking its toll.
“I’ve had a few falls recently,” she shares. “It’s like one minute you’re walking and the next you’re on the ground. You lose that balance, and sometimes you just don’t see it coming.”
Facing the Reality of FSHD
Despite these struggles, Leona’s outlook is anything but defeated. In fact, she’s found a new purpose in her journey. After learning about clinical trials through the FSHD Global Research Foundation, she was determined to get involved.
I heard about the clinical trials and knew I had to be part of it. I didn’t want to sit around waiting for things to deteriorate. Even if the trial proves unsuccessful, it might lead to a breakthrough down the line. I want to help anyway I can.
Leona
Leona’s drive to be involved in these trials stems from her fierce desire to keep fighting—not just for herself, but for others who share her condition. She’s now involved with Muscular Dystrophy QLD and was recently elected as a member of the board to help further the cause.
“It’s all about creating a network of people who understand what you’re going through,” she explains. “I’ve met so many people who are going through similar things. It’s comforting knowing I’m not alone in this.”
A Mother’s Strength
Despite the difficulties of FSHD, Leona’s resolve to live fully shines through. She is a living example of how people with progressive conditions like hers can keep striving, learning, and growing, never allowing their circumstances to define their potential.
“Some days are harder than others, but you just have to take it day by day,” she says, offering words of encouragement to others facing similar challenges. “There will be tough days, and there will be days when you just want to give up, but always hold on to hope.”
As a busy mum to two young kids, Leona knows how important it is to stay strong, not just for herself, but for her family.
I promised my son that I would make it to his graduation and walk up the stairs to hug him. I’ll make sure I’m there for those moments that matter.
Leona
Finding Community and Support
One of the things Leona cherishes most is the sense of belonging she’s found in her medical community. She has developed close relationships with the staff at The Wesley Hospital, where she receives her care, and feels truly supported by our team at the Wesley Research Institute.
“It’s not just about getting treatment, it’s about feeling like part of a family,” Leona says. “From the incredible nurses to the kind and compassionate doctors, everyone looks out for each other. I feel safe here, and I know they’re doing everything they can to help me.”
Whether through participating in clinical trials or simply living day-to-day, Leona’s courage and determination are nothing short of inspiring. As for her next steps, Leona continues to embrace every opportunity to make a difference, in the hope that one day a cure will be found for FSHD.
Leona (middle) with Clinical Trial Coordinators Jacqui and Emma