Daxton’s story, by his mother
“Daxton was one of a kind, and we miss him so dearly.“
How did you feel when your child received a diagnosis of GM1?
When Daxton got diagnosed, I felt completely lost, alone, and devastated.
What was the impact of GM1 on your child?
Watching the impact GM1 had on Daxton was gut-wrenching. Of course, he was young and never understood, but watching him lose all his abilities he used to have was so hard on us as his parents.
How dID GM1 impact your family?
GM1 impacts my family because in order to have more children, my husband and I have to go through expensive testing and IVF.
What WAs the hardest part of being a GM1 caregiver?
The hardest part about being a caregiver for me was spending all my time taking care of my sweet, special child, and then when he passed away, going from someone relying on me 24/7 to not having someone rely on me.
What do you wish people understood more about rare diseases?
I wish we would have been told about rare genetic diseases so we could have had genetic testing done before we decided to start a family.
Why should people support the Cure GM1 Foundation and rare disease research?
I think it’s so important to donate and support the GM1 Foundation and rare diseases so that we can push for a cure, that way all this hard, amazing work they’re doing doesn’t get put on the back burner or forgotten about. These babies deserve a shot at life.
Is there anything else you would like to add to your story?
Daxton was one of a kind. I’m sure a lot of these parents feel the same way about their kids. He is/was an absolute angel—my little piece of heaven on earth. He touched so many people’s hearts anywhere we went. Daxton was one of a kind, and we miss him so dearly.
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.