HAMPUS, JULIA & ISABELLA’ STORY

Our Story

“It is heartbreaking not knowing what tomorrow will bring, if it is the last time you will hear your child’s beautiful voice or if it is their last steps they will ever take. They are so BRAVE and STRONG little fighters, who really love being together. We all dread the day when they eventually have to leave each other.

How does GM1 impact your family?

We spend all our time outside of work caring for our children, there is barely time for anything else in our lives. When all of our kids received their diagnosis, we felt that it took away our entire future, both for us and for them. Our main priority now is to try to do what’s best for our children considering their disease, we barely do anything else. 1,5 years ago they got a baby brother that is not affected by GM1, and he has brought lots of happiness and joy to our family.

What is the impact of GM1 on your child?

They can’t walk independently anymore, but can get around using walkers. Julia doesn’t walk that much at all, as she’s developed a hip joint problem. They can’t talk much either, it’s mostly single words along with some signs and sounds. They have trouble controlling their temper and often need extra time to recover if they get upset. They’ve had trouble gaining weight, but we recently managed to get on top of that. They also need help getting dressed and all are still in diapers. They basically need help with everything related to daily living.

What do you wish people understood
more about rare diseases?

It truly is a devastating and cruel disease. It is hard for the children to learn any new skills and even to do the simplest things, and at the same time GM1 slowly takes away their other abilities. Our kids also understands much more than they can communicate. They can’t let us know how they feel, we often have to guess what is wrong when they are crying or seem to be in pain, but they understand.

Why should people support the Cure GM1 Foundation and rare diseases?

Only a few years ago there were no treatments available at all, but with the help from patient advocacy and supporting research, which is what Cure GM1 Foundation does, there are now a few trials going on.

Cure GM1 Foundation also helps with connecting people from all over the world, which is especially important for rare diseases, where a newly diagnosed family might not have anyone else to connect to nearby who shares the same diagnosis. We certainly don’t know about any other family with GM1 in Sweden where we live, and it’s been six years now since our diagnosis. Being connected to other families with the same disease means we can help support each other. Every bit of help matters, together we can help make the necessary steps towards a possible cure.

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