My Story

It has completely changed our family. We are closer than ever and have learned to enjoy every second we spend together. I quit my job to be her full time care taker and we have extended family here at our home most days out of the week. We take family trips often and do things so that we can make memories with her.

How does GM1 impact your family?

The hardest part is the toll this takes on my older child who is 3. She is not at the age where she can fully understand what is going on but she does understand some but doesn’t know how to process. I am constantly worried that we are not giving her enough attention or that we are going to miss something with her because of the amount of attention and care that Peyton requires.

What is the impact of GM1 on your child?

Peyton has never been like a “normal child.” She has missed milestones, has never sat up or rolled over, has had many hospitalization.

We found out through MyChart and were absolutely devastated, confused, hopeful that there could be some type of treatment for her.

What do you wish people understood
more about rare diseases?

That there is a little person in there with a personality and brain that has thoughts and works, even though her body may not be able to interject with us or move, she shows us glimpses of who she is all the time.

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

“This disease is cruel and unfair. These precious children do not ask to be born this way and we must find a cure for them.

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