Batul’s Story
Batul passed away from infantile GM1 (Type 1) on March 23, 2026. Below, her father shares her story so we can honor and remember the beauty she brought into their lives.
How did you feel when Batul received a diagnosis of GM1 gangliosidosis?
It came as a shock. At the time, we were only visiting the doctor as a formality. We didn’t expect anything from her genetics report. As they asked leading questions, my heart started sinking. I was preparing myself to receive bad news, but my lack of awareness on metabolic conditions kept me hopeful that I would see her grow up, possibly with few limitations. But then came the second blow: her condition is life-ending, and there is no cure. I was just pulling myself together when the final blow crushed me. Her life expectancy will be less than 3 years …
I remember seeing my wife crying uncontrollably with Batul in her hands. I was helpless, I didn’t know how to console her. I remember stepping out and still trying to absorb the situation. In a matter of minutes, our lives were shattered, dreams were lost and my daughter, who I had vowed to protect my whole life, had been taken.
How did GM1 impact your family during that time?
Anticipatory grief takes away our capacity to process other emotions. We are forced to talk about our lives in two stages: one with Batul and one without her. In our past, the life with her, there was so much uncertainty. We had given up on traveling, had lost our friends, we couldn’t empathize with anyone else outside the rare disease community, and we always felt we were at the losing side of things. Life was worth living when my daughter smiled or cried or was able to express her emotions. Now we grapple to stabilize our lives without her as our anchor
What was the most difficult part of being a GM1 caregiver?
You try your best, yet it isn’t enough. The disease progresses and the person you love the most gets taken away. In doing your best, you sacrifice so much, yet it is nothing compared to the sacrifice of our children, who are living with us while slowly losing everything they have. It is truly devastating to see them lose abilities to the point that they can’t swallow anymore or even move a finger.
What do you wish people understood more about rare diseases?
Since many are uncomfortable talking about it, not many questions are asked about the disease. I wish we talked about diseases and their implications more openly. Questions could help parents or caregivers educate or advocate and spread awareness. By not talking about the hardships of what your child is going through, it makes your child invisible, even while they are with you.
If you could tell people one thing about GM1 gangliosidosis, what would it be?
It is a painful way to go. They lose so much before facing the terminal aspect of this disease.
Why is it important for people to support the Cure GM1 Foundation and rare disease research/advocacy?
Like other diseases for which a cure has been found, I believe a cure is possible for GM1, as well. Without advocacy, rare diseases keep winning. It takes more and more lives each year and impacts more families each year. The cycle needs to break. I hope investments are made toward a cure, toward screening and toward making the lives of those affected more comfortable.
Is there anything else you would like to add?
My daughter, Batul, did not deserve this. At 2 years 7 months, she had seen more hospitalizations than most adults. Every time she came home, she had won a battle with GM1. But each battle cost her through physical toll and losing abilities. These were sacrifices she made to stay with us as long as she could. She loved being carried. I wish I could go back and do it more. Her laughter made us forget all about her woes. She kept bringing joy into our lives as long as she could. She had the cutest cheeks, the fanciest hair and the most adorable fingers. I wish I could hold them for longer. She passed away on March 23, 2026, in my arms (the way she liked), listening to our song (as she liked). We will continue missing her until the end.
Join us in keeping Batul and her family in our hearts.