Mia Rae Pruett
- Forever Age:
- 19; Mia passed away on March 24, 2013
- Home State:
- Armed Forces Europe
- Diagnosis Date:
- MPS/Sanfilippo Type:
- MPS III-C
- Billy and Kimberly
- Billy Jr. and Travis
What it felt like when we learned our child has Sanfilippo Syndrome…
Billy was in medical school when Mia’s Pediatric Neurologist told us that she had Sanfilippo Syndrome, so he knew that a death sentence had just been passed for our only daughter. I was oblivious for a few short hours and thought nothing could be worse than her other diagnosis of Autism. I soon found out just how wrong I was. It was a punch to the gut as the modified plans, hopes, and dreams we had for Mia were dashed and we learned to live on borrowed time.
Tell us about your child and what she enjoys?
Mia LOVED movies, especially Disney movies. She was never without at least one portable DVD player, along with a tablet and maybe her laptop. She thrived with all the attention she received from her peers at school and at her special needs camp. She loved to horseback ride, go on car trips, play special needs soccer, T-ball, play with all animals, and participate in Special Olympics. Mia always wanted to be the center of attention, and we definitely indulged her in that!
How has Sanfilippo affected our child?
Sanfilippo robbed Mia of a pain free life. It robbed her of a life filled with things that most kids get to experience, like boyfriends, dances, dates, marriage, and children of her own before it robbed her of her breath and life.
How has Sanfilippo affected our entire family?
Our lives revolved around that silly, loving kid. We never made any decisions without first examining how it may affect Mia. Normal vacations were out the window. The boys always had to put Mia first in everyday life. Then, we got to plan her funeral instead of her college application.
The hardest part of being a Sanfilippo parent is …
Knowing that every day could be Mia’s last day. Knowing that people stared and judged. Knowing that people did not understand why Mia acted the way she did. Knowing that people thought we were just bad parents who could not control our girl. Knowing that we would have to say goodbye too soon. Knowing that we would have regrets, but not being able to change that.
The biggest misconception people have about being a Sanfilippo parent is …
People felt sorry for us, but in reality, Mia gave us more than we ever could have imagined.
If we could tell people just one thing about Sanfilippo Syndrome, it would be …
This life and death is not for sissies.
If we could ask just one thing from the world/people, it would be …
…to help us find a cure.
Why are we asking you to donate to Cure Sanfilippo Foundation?
To help Mia be one of the last children to be lost to Sanfilippo and its devastating effects.