Matthew, his parents Jessica and Matt, and his sister Juliana.


 – The Soares Family


Current Age: 6

Home State: Massachusetts

Diagnosis Date: July 2018

Sanfilippo Type: MPS IIIA

Parents: Matt and Jessica

Sibling: Juliana

What it felt like when we learned our child has Sanfilippo Syndrome…

Devastating. Like my heart got ripped from my body. I went through so many emotions: sadness, pain, and anger. But, then I felt determination to help him.

What our child Loves the most is…

Matthew loves dancing, running, and his puppy.

How has Sanfilippo affected our child?

In every way.

How has Sanfilippo affected our entire family?

It makes it nearly impossible to work or travel. He needs at least two people with him at all times. He’s very difficult to handle.

The hardest part of being a Sanfilippo parent is …

Watching your child slowly deteriorate. Knowing that I’m going to have to sit back and watch my son die and there is nothing I can do about it.

The biggest misconception people have about being a Sanfilippo parent is …

I don’t think enough people know about it to even have a misconception.

If we could ask just one thing from the world/people, it would be …

To save Matty.

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

For a cure.


Our Latest News

We recently found out the Matty has Sanfilippo Type A.