- Current Age:
- Home State:
- Diagnosis Date:
- November 25, 2016
- MPS/Sanfilippo Type:
- MPS III-A
- Randy and Catriona
- Tyler, Paige and Heather
What it felt like when we learned our child has Sanfilippo Syndrome…
It felt like a little piece of us died. And that it’s just going to keep on getting worse. There is an actual pain in your chest, heartache I presume. But we also realized that we had to get involved. It’s not by choice, it’s a need. We need to get help. We need to find treatment. We need a cure. We need our baby girl.
What our child loves this most is…
Videos and songs, especially Laurie Berkner Band. Our family could recite her favorite shows like the Berenstain Bears, Dragontales, Caillou, and Curious George. Fiona loves to jump, so thanks to her Auntie Holden we have an 8 foot trampoline (with safety netting) in the middle of our family room. She’s already jumped through 2 couches so it’s actually logical, lol. She has always loved water, you couldn’t get her out of our freezing cold pool back in Michigan. Now she gets to play at the beach or at Jud’s pool. She just might like the hot tub better though. Fiona is a big fan of food, and is always looking to steal your drink. I think her absolute favorite is her family. Daddy can always bring a smile to her face. Paige is her snuggler, while Heather is her entertainer. She’s always looked up to her big brother – “Ty” was her first word. Mummy is the go to for hugs and kisses.
How has Sanfilippo affected our entire family?
We’ve always considered Fiona first. From halfway through her pregnancy she has asked for a little extra attention. I’m just so proud that my other children have always taken such great care of their sister. Now it seems impossible to imagine that will end. That the day will come when we don’t have to be ready to follow wherever she goes, knowing that she’ll get something in her mouth. Knowing the day will come when her contagious laugh won’t be heard and we won’t have her hand to hold.
The hardest part of being a Sanfilippo parent is …
Exhaustion. It’s endless. There is a constant barrage of things to do. From keeping her safe from putting things in her mouth… and now making sure her drinks have been thickened. We also need to keep her entertained and happy. It’s not hard, it just takes energy. Which is something that having a chronic pain condition doesn’t allow. Lucky for us Daddy is the Energizer bunny, or we would have crashed and burned years ago.
The biggest misconception people have about being a Sanfilippo parent is…
That our children are broken in some major way. But in reality, they are just different. They have different needs. Once you accept that, you realize how truly amazing they are.
If we could tell people just one thing about Sanfilippo Syndrome, it would be…
It’s the worst possible thing that you’ve never heard of.
If we could ask just one thing from the world/people, it would be…
Please help us find a cure. Fiona brightens every room she walks into. The world shouldn’t lose that.
Why are we asking you to donate to Cure Sanfilippo Foundation?
It’s the only hope for our children. Unfortunately the world revolves around money. We need to fund research, clinical trials, and treatments from these trials. Ask yourself, how much money is needed to cure breast cancer? Now think how many give to cancer research. Rare diseases need these funds just as much, except we first need to raise awareness that these illnesses exist. Our kids don’t have time to wait. They don’t even get the time to grow up.