In early 2024, Lydia was diagnosed with Sanfilippo Syndrome, a

neurodegenerative disease that is like Alzheimer's in children. She will

lose all the skills she has gained in her short life, suffer seizures and

movement disorders, and eventually die in her teens.

Currently, there is no FDA-approved treatment or cure for Sanfilippo

Syndrome. But there is hope. Scientists are conducting more research

than ever. Your support enables that life-saving research to continue

until a cure is discovered.

What it felt like when we learned our child has Sanfilippo

Syndrome…

It felt as if we were drowning and couldn't come up for air. This was the

worst news our family has ever encountered. The thought process of

"my child is going to die" ran frequently through our minds. That is the

worse thing a parent could ever hear.

How has Sanfilippo affected our child?

Lydia, thankfully, was able to be diagnosed early before the disease

takes over her brain and body. Right now, she is loving life, talking and

walking around with a smile on her face. She is our sunshine.

How has Sanfilippo affected our entire family?

This has made us cherish each and every day with her. We were first in a

dark place. Now, we are trying to hard to fight for her. We hope she can get

into a clinical trial for treatments before Sanfilippo starts affecting her brain

and the regression begins.

Why are we asking you to donate to Cure Sanfilippo Foundation?

Because no parent should have to experience the pain and helplessness of

not being able to save their child. And these children deserve to have a long

and happy life as beautiful and perfect as they are.

For more information or to donate to help save Lydia:

Lydia’s Gofund Me: https://gofund.me/bff401dd

Lydia’s Story: https://youtu.be/syb3OFhW7rA

Cure of Sanfilippo Foundation: curesanfilippofoundation.org

TikTok: Hope for Lydia