Strength for Today, Hope for Tomorrow: Laila’s Story
We are Sam and Angela, and this is the story of our daughter, Laila. Our journey with leukodystrophy began when our daughter, Laila, was diagnosed with MLC1 with subcortical cysts at just 2 years old. Today, she is 14.
She began walking independently, though with a slightly awkward gait. By age 8 she needed a walker, and by 11 she transitioned to a wheelchair. Each step in her progression has been difficult to accept, not because she isn’t thriving in her own way, but because the future is filled with so many unknowns. Not having a solid idea of what her future looks like. Because the condition is so rare and not the same for every person, the only real guide we have is to use her past progression as a predictor. We often look back at old videos and photos of her walking, and that’s when the reality of her progression hits hardest and gut punches.
Today, Laila struggles with balance and limb control. Falls are our biggest concern, so she cannot be left unattended for long stretches of time.
She is relying on us more for daily activities, but we try not to dwell on the unknowns of the future.
Today, Laila struggles with balance and limb control. Falls are our biggest concern, so she cannot be left unattended for long stretches of time. She is relying on us more for daily activities, but we try not to dwell on the unknowns of the future.
Along the way, we have learned some lessons that we would want other families beginning their journey to hear, accepting help does not make you a bad parent. Respite and support allow you to care better for your child. And try to stay rooted in the present, because worrying about the unknowns of tomorrow can quickly overwhelm you.
The United Leukodystrophy Foundation (ULF) has been an important part of our support system. We have attended the Family Conference and webinars, and through them, we have met other families who truly understand what we are going through. It has made us feel less alone.
We wish more people understood the reality of living with leukodystrophy. Research for rare neurological conditions often doesn’t make it to the top of the priority list, moves slowly, and is underfunded. The disease itself robs kids of some of the best parts of being a kid. Although her condition may be the first thing you notice when you meet Laila, it is the least interesting thing about her.
Because here is what makes her shine:
- She graduated from grade 8 with a 95% average.
- She runs her own bracelet business.
- At just 8 years old, she raised $1,000 for Ronald McDonald House Charities by selling her paintings.
- She goes indoor rock climbing.
- Solves puzzles without even looking at the finished picture.
- After receiving her own power chair through Pop Tabs for Wheelchairs, she became a tireless supporter of the Pop Tabs for Wheelchairs fundraiser.
- And when it comes to arm wrestling, her strength is unmatched, even her 17-year-old brother can tell you that!
Our journey has taught us to take each day as it comes. What we hope for is a future where families like ours feel less alone, and where research and awareness give kids like Laila every chance to shine.
Your gift today helps families, like Laila’s, find hope and know THEY ARE NOT ALONE!