Carter’s story, by his mother
“Carter Michael was diagnosed with GM1. He was our precious child, born on May 23, 2013.“
How did you feel when your child received a diagnosis of GM1?
I felt confused and helpless, because when we learned about Carter’s diagnosis, there was very little information available to us as parents.
How has GM1 gangliosidosis affected your child?
GM1 impacted Carter’s entire life. For instance, he never got to walk and never got to talk. Hence, he never got to experience going to school. These milestones that many parents take for granted were never possible for him. As the disease progressed, he eventually couldn’t do anything except breathe. However, through all these challenges, we cherished every moment we had together.
How does GM1 impact your family?
Carter’s disease required my care 24/7, because he could not care for himself in any way. This meant I needed to be with him constantly, adjusting our entire family life around his needs.
The hardest part was knowing there would be a day he wouldn’t be with us and there was nothing I could do about it. But the best part is that we had each other. We spent every second of life together, creating memories and finding ways to connect despite the limitations GM1 placed on him.
Why should people support the Cure GM1 Foundation and rare disease research?
It is the worst thing I’ve ever thought I would experience. Losing my child was devastating. No parent should have to hear that their child has a disease with no treatment or cure, and that they won’t live long. It is heartbreaking.
People should support rare disease research because my innocent child lost his life and I will forever be broken without him. No other families should have to experience this same pain.
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.