THE FULLER FAMILY
Victoria, her parents Jeff and Jenn, and brother Nicholas.
“Sanfilippo has taught us to take one day at a time, live in the moment and make the best of each day.”
– The Fuller Family
Current Age: 4
Home State: Florida
Diagnosis Date: March 26, 2020
Sanfilippo Type: MPS IIIA
Parents: Jeff and Jenn
What it felt like when we learned our child has Sanfilippo Syndrome…
Heartbroken, like my whole world just came crashing down.
No parent wants to hear their child is dying.
What our child loves the most is …
Victoria loves reading her books! She also loves Jumping, music, dancing and Elmo!
How has Sanfilippo affected our child?
Sanfilippo has taken most of Victoria’s speech away, and it’s affected her cognitively. She’s mentally more like a two-year-old, and we now have four therapies going to help her in anyway possible.
How has Sanfilippo affected our entire family?
Everyone is just devastated and shocked. To watch our friends and family cry for us breaks our heart, but also seeing their support and love gets us through another day.
The hardest part of being a Sanfilippo parent is …
Grieving the loss of the life you thought your child would have and watching this terrible disease take little bits of my beautiful daughter away and feeling helpless.
The biggest misconception people have is …
Feeling sorry for us or not wanting to ask questions… Yes, it’s a devastating disease, but we just want love and support for Victoria, no matter what. We want to talk about it, to raise awareness. She’s still the same sweet girl she was before we got the diagnosis.
If we could tell people just one thing about Sanfilippo Syndrome, it would be …
The sadness never goes away, but you learn to cope with your new normal way of life. You do what you have to do to keep hope alive.
If we could ask just one thing from the world/people, it would be …
Help us fight for Victoria! We are her voice.
Why are we asking you to donate to Cure Sanfilippo Foundation?
To help fund research and clinical trails in hopes that we can find something to help Victoria’s quality of life!