Belle and her parents James and Katie and sister Arden.
“OUR PURPOSE IN LIFE IS TO FIND A CURE FOR SANFILIPPO SYNDROME AND SAVE BELLE. WE WILL NEVER LOSE HOPE.”
– The Barris Family
BELLE BARRISCurrent Age: 4 Home State: Florida Diagnosis Date: December 5, 2019 Sanfilippo Type: MPS IIIA Parents: James and Katie Sibling: Arden
What it felt like when we learned our child has Sanfilippo Syndrome…
The day we received the diagnosis that Belle has Sanfilippo Syndrome, our entire world stopped. All of the hopes and dreams and plans for Belle and our family’s future felt shattered. We felt grief and sadness and anger and, most of all, helpless.
It honestly still does not feel real. We are trying our best to be hopeful and direct all of our effort to fighting for a cure. We will do anything to save Belle.
What our child loves the most is …
Belle loves to sing and dance. She gives the best hugs. Her giggle and smile light up our entire world. She loves to run and play outside. She loves animals, golf cart rides, family walks, and Mickey Mouse.
How has Sanfilippo affected our child?
We have seen the progression of Sanfilippo Syndrome hit hard the last few months. Belle is talking so much less and losing some of her skills.
How has Sanfilippo affected our entire family?
Our entire family has a new mission in life … to save Belle and find a cure for Sanfilippo Syndrome so that no other children and families ever have to go through this.
The hardest part of being a Sanfilippo parent is …
The hardest part of being a Sanfilippo parent is the reality of knowing there is no cure.
Before diagnosis, we were always happy and positive and excited for the future. Now the future is scary and unknown. It is hard to imagine what lies in store for us, and we just want to do everything we can to ensure that Belle has the best possible life.
The biggest misconception people have about being a Sanfilippo parent is …
That we are not doing everything we possibly can to save our daughter. We would give anything and everything to cure her.
If we could tell people just one thing about Sanfilippo Syndrome, it would be …
It is our worst nightmare. We could never have imagined something so horrible for our daughter. Rare diseases are really not that rare. MPS affects so many children and families. We need a cure!
If we could ask just one thing from the world/people, it would be …
We would ask for kindness. You never know what struggles people are facing. Every day, every minute, every second with Belle is so precious. All we want is more time and more memories with our sweet girl.
Why are we asking you to donate to Cure Sanfilippo Foundation?
Please donate to the Cure Sanfilippo Foundation to help find a cure to save Belle. Cure Sanfilippo focuses on research, development, funding clinical trials and advocating for children like Belle.
We need a cure NOW and the only way to find the cure is through more trials. We do not have time to wait.
Our Latest News
Our family is new to the fight to cure Sanfilippo. We found out in December 2019 our sweet Belle has MPSIIIA. Our main focus currently is getting Belle into a clinical trial in hopes to finding a way to stop progression of this horrible disease.