Trinady and her mother Leigh Ann and brothers Karsyn and Kruz.
“I DIDN’T KNOW I COULD LOVE SOMEONE AS MUCH AS I LOVE HER.”
– Trinady’s Mother
TRINADY BOWENCurrent Age: 9 Home State: Missouri Diagnosis Date: March, 2017 Sanfilippo Type: MPS IIIA Parents: Leigh Ann and Michael Siblings: Kaylee, Breanna, Karsyn, and Kruz
What it felt like when we learned our child has Sanfilippo Syndrome…
My heart dropped; all I could do was ask why. Why my daughter. I cried and I prayed. And I still cry and pray for something to be done.
What our child Loves the most is…
How has Sanfilippo affected our child?
In many ways too fast. It has affected her hearing, eating, drinking, walking, sleeping, her voice… all of this happened in less than 9 months.
How has Sanfilippo affected our entire family?
Trips to doctor appointments and time away from everyone due to hospital visits. Making sure everyone is healthy before they come in the house. The hardest part is staying strong for her.
The hardest part of being a Sanfilippo parent is …
Watching my daughter go through something I cannot stop.
The biggest misconception people have about being a Sanfilippo parent is …
Not believing that it is really happening.
If we could ask just one thing from the world/people, it would be …
How would you feel if it was your child?
Why are we asking you to donate to Cure Sanfilippo Foundation?
We are asking for your help to Cure Sanfilippo because it’s a bad thing. It takes our kids away from us in the blink of an eye.