Aidan’s story, by his grandmother
“Don’t give up hope, but cherish each moment.“
How did you feel when your grandchild received a diagnosis of GM1?
I was shocked. Our daughter had had all the genetic testing done so how could there be anything wrong with Aidan.
How did GM1 gangliosidosis affect your grandchild?
At first, it slowed his progression. He started missing milestones. But then it started robbing him of the milestones he had reached. He was crawling, throwing balls, almost walking, almost talking and then he wasn’t.
what was it like watching your own child navigate being a caregiver?
It was devastating watching our daughter and her husband deal with Aidan’s decline. As her parent, I wanted to protect her from anything that could break her heart. But there was nothing I could do except love her and help her in any way possible.
What has been the most difficult part of this journey as a grandparent?
Watching Aidan lose his abilities: crawl, sit up, babble, play with toys. And then finally losing Aidan on 9 February.
What do you wish people understood more about rare diseases?
They can happen to anyone.
Why should people support the Cure GM1 Foundation and rare disease research?
GM1 should be part of regular genetic testing. Then there should be treatments for this disease. It shouldn’t be fatal. If more people supported Cure GM1 these goals could be reached.
What would you want other families facing a similar diagnosis to know?
Don’t give up hope but cherish each moment.
Is there anything else you would like to add to your story?
Becoming a grandmother was the most exciting and rewarding experience of my life. Now I’m left with empty arms.
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.