- Forever Age:
- Home State:
- Diagnosis Date:
- April 14, 2017
- MPS/Sanfilippo Type:
- MPS III-A
- Joe and Cindy
- Joe, Kate, Liesl, Laura, Rachel, Mark, Isabel
What it felt like when we learned our child has Sanfilippo Syndrome…
Relief that we finally had an explanation after 22 years.
What our child loves this most is…
I’m going to list many things: being with his family, milkshakes, hats, French fries, getting in the pool, having his head rubbed, birthday candles, Tom and Jerry cartoons, Old Yeller movie, car rides, and trips with Dad to Home Depot and Walmart.
How has Sanfilippo affected our child?
Loss of ability to speak, agitation, and progressive loss of cognition & motor skills.
How has Sanfilippo affected our entire family?
Danny’s struggles helped his siblings become grounded adults with a good perspective on what is really important in life.
The hardest part of being a Sanfilippo parent is …
Worrying about the future, specifically, how will he/she deteriorate and how will we manage their care?
The biggest misconception people have about being a Sanfilippo parent is…
I never really considered myself a Sanfilippo parent because we didn’t know the diagnosis until 9 months before he passed away. I always thought of myself as “Danny’s mom.” He was famous (maybe infamous?); everywhere we went, people would say, “Oh, your Danny’s parents!”
If we could ask just one thing from the world/people, it would be…
Educate yourself about the disease and spread the word.
Why are we asking you to donate to Cure Sanfilippo Foundation?
To find a proven treatment or cure.