Gael’s story, by his mother

“Gael was diagnosed with Type 1 infantile GM1 on his first birthday“

How has GM1 gangliosidosis affected your child?

GM1 symptoms began to show in Gael’s early development. In addition, his liver has started to enlarge, and he has developed laryngomalacia, which makes breathing more challenging.

Despite these obstacles, Gael continues to show remarkable resilience in the face of this rare disease.

How does GM1 impact your family?

The diagnosis came like a storm, knocking us down with its impact. I felt completely lost. For days, I lived in absolute mourning, just crying while my son was right there beside me. Looking at him and thinking that in a short time he might no longer be with us was devastating.

After this first shock, we quickly found the strength to stand up and fight for our most precious gift. In hope, we can find the resilience that we need to keep fighting. Gael is a beautiful and blessed boy. There isn’t a single day that I look at him and don’t feel God’s presence.

What do you wish people understood more about rare diseases?

It’s an enormous challenge, racing against time, and it’s not easy. However, the only thing I can say is never lose your FAITH.

As a mother, I don’t wish for any other mother to feel this pain, and may we have hope in the face of such a devastating diagnosis.

Why should people support the Cure GM1 Foundation and rare disease research?

Many rare diseases don’t have treatments or “cures” yet, but that doesn’t mean we should simply give up. We firmly believe that as long as there is life, there is hope. Understanding and awareness are crucial steps toward finding solutions for these challenging conditions.

People have tremendous power, and together, we can achieve more visibility for rare diseases to advocate for the necessary funding to continue crucial research. I’ve always heard that unity is strength, so why not unite for such a noble cause? Who knows, if through our unity we might achieve a cure for many families? We must create opportunities for science breakthroughs.