Lulu and her parents, Sasha and Jimmy, and sister Jennifer (not pictured).
“TEACH US TO REALIZE THE BREVITY OF LIFE, SO THAT WE MAY GROW IN WISDOM.”
– The Holder Family
LULU HOLDERCurrent Age: 5 Home State: Texas Diagnosis Date: March 8, 2017 Sanfilippo Type: MPS IIIA Parents: Sasha and Jimmy Sibling: Jennifer
What it felt like when we learned our child has Sanfilippo Syndrome…
We were crushed. Absolutely crushed. We sobbed for days.
What our child loves this most is…
Playing. She loves to play with her sister, her friends at school, her cousins, her dolls and Barbies. Sometimes she even tries to turn her friends into dolls! She is such a social butterfly, and she would have been such a good mother.
How has Sanfilippo affected our child?
Without Sanfilippo Syndrome, Lulu would have been like her sister.
Instead of starting kindergarten this year, Lulu attends a special needs preschool with five therapists and specially trained teachers. Instead of taking gymnastics and swimming lessons after school, she has four private therapies a week. Instead of homework, she practices stringing beads and stretches her tight leg muscles. Instead of playing at a regular playground, she goes to handicapped playgrounds with no stairs, padded surfaces and special swing sets. Instead of walking around the zoo, she rides in a medical stroller.
How has Sanfilippo affected our entire family?
Although we are exhausted and often overwhelmed, we are blessed to have family that rallies behind us to support us when it’s needed.
The hardest part of being a Sanfilippo parent is …
This lifestyle is exhausting. Lulu’s night time parties make getting up for work very difficult. Taking Lulu to her special education preschool and to multiple therapies takes up 3-4 hours a day. Plus the added stress of needing to work on her therapies at home. We can never take our eyes off of her for even a minute. By the end of the day, we’re exhausted, and there is no light at the end of the tunnel. We’ll be living this life for the foreseeable future.
The biggest misconception people have about being a Sanfilippo parent is…
People cannot talk about their kids with us. We want to hear about your daughter graduating High School and your kids wedding plans. Please don’t be afraid to talk to us.
If we could ask just one thing from the world/people, it would be…
Please help fund research for Sanfilippo Syndrome.
Why are we asking you to donate to Cure Sanfilippo Foundation?
Please take a moment to read through the research grants funded by Cure Sanfilippo. This foundation funds scientific research that would not otherwise be funded.