HECTOR “Gabo” GARCES

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

It was the worst news we ever had to date, it was an unprecedented pain to learn what this disease can do to your child. Our children are what we love the most in this world.

How has Sanfilippo affected our child?

Since 18 month old he has lost the ability to talk, which has deeply impacted his social and learning skills. He has not been able to develop like a normal kid, he has not been able to practice sports, develop friendships or be self-sufficient.

How has Sanfilippo affected our entire family?

A large amount of our time is now spent at looking for special education and other information that can help our son, which has decimated the energy invested in other activities that are needed as a family.

It has impacted our family’s social life, as it is hard to do activities like a regular family. When in public, sometimes it is difficult to control our son and people will give us looks and comments about how should we raise him.

The hardest part of being a Sanfilippo parent is …

To see how time passes by and he loses some skills, his childhood time that he is not fully enjoying and taking advantage of.

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

People think I should give up my expectations and dreams about my son. But in reality, I’m full of hope that together we can make a change in medical history and we will see the miracle.

If we could tell people just one thing about Sanfilippo Syndrome, it would be …

We will not be defeated by Sanfilippo Syndrome!

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

To be inclusive of people with special needs, to give love to those in need, that love will actually make their lives richer.

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

It can save the lives of so many children and change the world for the families, like us, who are going through this.