Peyton Claire’s story, by her mom
“The light she has brought into our lives has forever changed us“
How did you feel when your child received a diagnosis of GM1?
We were devastated when we got the diagnosis, and still are. Grieving a child that is still living, anticipating the worst at every sickness, and knowing that they will never live a full life changes you in ways you can’t put into words. We will never be the same.
How has GM1 gangliosidosis affected your child?
It has impacted her in every possible way. As much as we don’t want the disease to define her, it does. She was never able to reach even the seemingly smallest milestones that a child is supposed to reach, like sitting unassisted and standing. We grieve all of those little things for her, but we also celebrate the smallest victories—things that might seem insignificant to others but mean the world to us.
How does GM1 impact your family?
GM1 has impacted our family in numerous ways—emotionally, spiritually, financially, and physically. There have been so many challenges, but it’s also changed our outlook on life, strengthened our faith, taught us the importance of our support system, and shown us how to form deeper connections with people while celebrating small victories.
What is the hardest part of being a GM1 caregiver?
Concerns about Peyton’s life expectancy and quality of life weigh heavily on us as caregivers. The uncertainty is anxiety-inducing and emotionally taxing. Each day brings new challenges that require constant adaptation and resilience.
Why should people support the Cure GM1 Foundation and rare disease research?
Rare diseases like GM1 gangliosidosis often lack sufficient research funding. Families affected by conditions like GM1 wish for greater awareness and advocacy to promote research that can lead to better treatments and a potential cure. These children deserve a chance at life. Supporting organizations like the Cure GM1 Foundation directly helps advance critical research and provides hope for families facing this devastating diagnosis.
What do you wish people understood more about GM1?
I hope your family is never affected by it.
GM1 gangliosidosis is a devastating rare genetic disorder that impacts neurological development and function, affecting every aspect of a child’s life and their family’s future.
Your support can help families like ours find hope and advance research toward a cure for GM1 gangliosidosis. To learn more about how you can help, please visit the Take Action page or Donate here.