- Current Age:
- Home State:
- Diagnosis Date:
- January 17, 2019
- MPS/Sanfilippo Type:
- Type A
- Cory and Jamie
- Treyven and Tyson
What it felt like when we learned our child has Sanfilippo Syndrome…
Hearing a diagnosis like this one feels like someone has their hands around your throat and you are choking with fear. It’s a hopelessly, heartbreaking fate. We cried when we were told, and still do almost daily. There is no silver lining. There is no light at the end of the tunnel. It’s the most helpless feeling when your child is handed a death sentence.
What our child loves the most…
Trenton enjoys music, jumping on his trampoline, riding in his golf cart, watching Mickey Mouse and Frozen, and his favorite things to eat are Oreos and blueberry pie.
How has Sanfilippo affected our child?
We started seeing issues with Trenton when he was about 3 years of age. He had hearing loss and speech delays, and was diagnosed with developmental delay. A couple years later, there were behavior problems. We got a diagnosis of ADHD and started meds around age 6. He began wearing hearing aids. At age 8, he had a grand mal seizure and was diagnosed with epilepsy. He was put on seizure meds. Around age 10, we started noticing memory problems and a decrease in verbal-expressive communication. School has always been a struggle. He started in a regular classroom until 1st grade we went to learning support and then in 2nd grade, we put him in an Autistic Support classroom. At 11, he was diagnosed with autism and craniostynstosis. By the age of 12, Trenton was pretty much non-verbal and became very aggressive. He received a diagnosis of bipolar from a psychiatrist and started psych meds. Also around age 12, he could no longer ride his bike, which was one of his favorite things to do. Also around age 11, we went to wearing pull ups as Trenton lost the ability to control his bladder and bowels. He is unable to feed, shower, or dress himself. Essentially Trenton is functioning at around a 10-month-old level. We had some tests done around age 8 and again around age 12 and, in 4 years, his IQ dropped from an 87 to 48. His repeat MRI led us to a diagnosis of leukodystrophy due to the changes in his brain in the summer of 2018.
How has Sanfilippo affected our entire family?
This journey has been heartbreaking. Diagnosis after diagnosis. More loss of skills. Watching our sweet boy lose all functioning and independence has been very difficult. Our other two boys, ages 10 and 7, are the best brothers to Trenton. They help him, hug him, and help us take care of his needs. Our lives are very busy having two other sons who are very active. Trenton often isn’t able to attend their events which usually means one of us has to miss it to take care if him.
The hardest part of being a Sanfilippo parent is …
Struggling with his needs and loss of abilities and always wondering if he’s happy. Never knowing what he’s thinking or wants or needs because he cannot tell us. His overall quality of life saddens me. While we try our very best to give him great experiences, this disease doesn’t always allow him to enjoy them.
If we could ask just one thing from the world/people, it would be …
Acceptance and understanding.
Why are we asking you to donate to Cure Sanfilippo Foundation?
We need a cure to save our children!