DANNY FEINOUR

Forever Age: 23; Danny passed away in 2018

Home State: Maryland

Diagnosis Date: April 14, 2017

Sanfilippo Type: MPS IIIA

Parents: Joe and Cindy

Siblings: 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!”