Ayesha’s Story
Ayesha is the only child of a family who has already endured heartbreaking loss. Below, her father shares how GM1 has affected Ayesha and their family, and why awareness and support matter so deeply.
How did you feel when Ayesha received a diagnosis of GM1 gangliosidosis?
When I received the diagnosis, I first thought, “It’s just a disease.” Then I searched online and found out that a cure is not available. My whole world turned upside down.
What was the impact of GM1 on Ayesha?
Ayesha did not develop motor movements. She did not sit, stand, or eat properly.
How does GM1 impact your family?
My parents and wife are in shock, as we just found out about GM1.
What is the hardest part of being a GM1 caregiver?
The hardest part about being a GM1 caregiver is that you know, no matter how hard you try, it feels useless. You will lose your loved one.
What do you wish people understood more about rare diseases and the experience of living with GM1?
I wish to spread awareness about this disease so that no other parents’ hearts break like ours, and so their child can live a healthy life.
If we could tell people just one thing about GM1 gangliosidosis, what would it be?
Take it seriously. It’s not a joke. Be strong and have faith in God. Miracles can happen.
Why should people support the Cure GM1 Foundation and rare diseases?
Today, it’s someone else’s problem. Tomorrow, it could be yours.
Is there anything else you would like to add to your story?
Ayesha is our only child. We lost two daughters before her. Now we are so heartbroken that my wife does not want another child.
