- Current Age:
- Home State:
- New York
- Diagnosis Date:
- March 15, 2010
- MPS/Sanfilippo Type:
- MPS III-C
- Jill and Jeremy
What it felt like when we learned our child has Sanfilippo Syndrome…
As if a wormhole opened up under my feet and sucked me into outer space. Dark, alone and terrified.
What our child loves the most…
I’m going to go with, playing tag with his friends. Sadly that’s #2, playing video games would be his first choice. Ugh
How has Sanfilippo affected our child?
He picks his fingernails and stares into space as if he’s thinking about something really hard. I want to get into his brain; what is he thinking…. Articulating his thoughts and communicating in complete sentences doesn’t come easily. He’s starting to realize that he doesn’t have as many friends as he used to. The boys that once played soccer with him avoid him at the playground. You can see the hurt and confusion on his face.
How has Sanfilippo affected our entire family?
My husband and I rarely take family vacations. I’m always working to save Jonah’s life, while Jeremy works to keep the household afloat. We don’t go on dates anymore. We can’t leave Jonah alone with babysitters. Jonah’s aunt accompanies us on long work trips. Taking time out of her life to help us take care of Jonah. Grandparents worry, they worry for us and our well-being and fear that we will lose Jonah. Everything revolves around Jonah. Where we live, where we go and how we spend our money. We only had one child, we wanted a house and vacations. Instead we sold our house and use the proceeds to support research towards a cure. Nothing is as we planned. Except one thing… Jonah has and will always be the center of our Universe. He is the best thing that ever happened to us.
The hardest part of being a Sanfilippo parent is …
The constant worry. Worried if he’s being bullied at school. Worried that he will die before we wake.
The biggest misconception people have about being a Sanfilippo parent is …
That we feel sorry for ourselves. These are the cards that we were dealt and we’re playing them as best as we know how.
If we could ask just one thing from the world/people, it would be …
Why are we asking you to donate to Cure Sanfilippo Foundation?
Because we love our children. No parent should watch their child die of a disease that could easily have been treated a decade ago. If only we had the attention of drug companies. Because our patient population is so small, it has been left up to the parents to drive and fund the research for a treatment.