Locky Booth endures weekly physiotherapy and each night his parents stretch his legs.
It's a lot for toddler but necessary therapy for the boy's Duchenne Muscular Dystrophy.
The family received the diagnosis in May when he was three.
"At first, we were overwhelmed by so many emotions, and it was hard to even name what we were feeling," said his mom, Leanna Booth. "It also was quite isolating, knowing that Duchenne affects only about 1 in every 5,000 boys. Because of that, it was difficult to connect with others or have the tough conversations – most people around us simply didn’t understand the disease. Now, looking back, we can say that what has weighed on us the most is grief and fear. The grief comes from mourning the life we had imagined for him – so much of which feels like it was taken away the moment we received the diagnosis."
But the disease is relentless so they had to upend their lives to make sure Locky has the treatments he needs. Thankfully he loves his weekly swimming sessions.
"Each morning, he takes a steroid along with vitamin D drops to support his bones. His diet has shifted to low sodium, and we aim to avoid foods with preservatives. Throughout the day, we have to be mindful of his energy levels – making sure he doesn’t overexert himself. Energy conservation has become part of our daily routine. It can be tricky to find the right balance between encouraging strength-building activities and knowing when it’s time for him to rest.
Every night are stretches to keep his legs and ankles flexible and help prevent contractures. He’ll soon be wearing night-time braces as well, which will gently stretch his muscles while he sleeps. Weekly he does a physio session, occupational therapist session, and swimming once or twice a week.
All the work is to forestall what they know is coming.
"Given the typical progression of this disease, there’s a very high possibility that, without the help of modern science, Locky could lose the ability to walk by the age of 10," Leanna said. "As the condition progresses, muscle weakness continues through the teenage years, eventually affecting the heart and lungs. In the past, many boys with Duchenne didn’t live beyond their 20s due to cardiac or respiratory failure. However, with advances in medical care, individuals are now living into their 30s and in some cases, even longer."
That's why the family is so grateful to the Township of 黑马磁力 Firefighters who are big supporters of Fill the Boot, the MD Canada Boot Drive. Local firefighters will be out in the community Sept. 12 to 14 accepting donations. * Watch for additional details, including locations, when information becomes available.
"It means the world to us that the firefighters are not only raising funds, but also helping to spread awareness and show support for the neuromuscular community. We are deeply grateful to both organizations for their care, compassion, and commitment," she said.
The funds raised go to MD Canada which not only supports people with MD but also funds research, a bright spot for the family.
"They help fund essential equipment – like wheelchairs – when needed, and have even offered to assist in educating school staff about DMD when Locky reaches school age. They’ve been an incredible resource for our family, and for so many others like us," Leanna noted. "From our perspective, what we’re most grateful for is MDC’s commitment to funding research. Unfortunately, some promising treatments developed in labs are stalled due to lack of funding. Charitable organizations like MDC help bridge that gap."
Every parent has hopes for their children and for now, those are on hold while fighting the disease takes centrestage.
"That reality has made his future look very different from what we had ever imagined. And with that comes fear – fear of how to preserve as bright a future as possible for him, which, as parents, is always our greatest hope for our children. There's also fear about the medical decisions we may have to make on his behalf, and what he may have to endure."
But the Booths, Leanna and her husband, Matt, along with their 15-month-old Violet, still focus on being a loving family who enjoys the support of their extended family, many of whom are still in 黑马磁力/Aldergrove, the community, the medical team at BC Children's Hospital, and MDC. Matt grew up in Aldergrove and worked for his family-owned construction business. Leanna moved here as a child, living in Murrayville and going to high school in Brookswood. They spent the past few years living in Aldergrove, where she worked as a realtor.
In light of the diagnosis and to allow Leanna to stay at home, the family recently relocated to Courtenay.
"Though Duchenne has taken so much from us, we won’t let it take away our love, our laughter, or our joy in life. We're learning to shift our mindset from fear of the disease to hope for the future," Leanna said. "There are so many companies actively investing in research to help boys living with Duchenne, and every dollar directed their way truly makes a difference. We are hopeful that Locky is part of a new era – one where the outcomes are different from the past, thanks to scientific progress and dedicated support."
DUCHENNE MUSCULAR DYSTROPHY
It is an inherited disease characterized by a progressive muscle degeneration. It is caused by an absence of dystrophin, a protein that supports the integrity of muscle cells. Symptoms are usually detected in early childhood. The disease primarily affects boys but in rare cases can also affect girls.
Locky's parents noticed some subtle signs.
"The symptoms we noticed at the time included frequent falls, difficulty going up stairs, and an inability to jump with both feet leaving the ground," Leanna explained.
They learned about the other signs of Duchenne, such as enlarged calf muscles, Gowers manoeuvre (how he gets up off the ground), a waddling gait (walking with toes pointed outward), and stiff ankles. Looking back, these were clear indicators, but they weren’t obvious to the family at the time.
According to MD Canada symptom onset can be as early as age three and usually affects the muscles of the hips, pelvis and shoulders, progressing to the skeletal muscles. By the early teens, the heart and respiratory muscles may also be affected. A diagnosis of DMD includes a shortened life expectancy and the expectation that eventually, equipment such as a wheelchair and respiratory aids will be required.