LEILA MERRILL

Current Age: Forever 9; Leila passed away in her sleep November 27, 2022, just two days from her 10th birthday. 

Home State: New Jersey 

Diagnosis Date: March 15, 2018 

Sanfilippo Type: MPS IIIA 

Parents: Terrence and Elizabeth 

Sibling: Jack 

What it felt like when we learned our child has Sanfilippo Syndrome…

Like most people, we had never heard of Sanfilippo Syndrome and couldn’t believe something so horrible could even exist. How could there be no cure, not even a treatment? We were crushed, completely devastated, and angry that our little girl would be robbed of the most basic experiences of life. Our hearts were broken.

What our child loves this most is…

Eating ice cream, listening to music and singing, and spending time with family.

How has Sanifilippo affected our child?

Because of this disease, Leila will never experience life as most kids her age do. She requires constant supervision and cannot communicate well with her peers. Sanfilippo Syndrome has caused her to suffer cognitive and behavioral issues. Her limitations often lead to exclusion. When people cannot see beyond her symptoms, they miss the sweet, fun-loving girl that we know.

How has Sanfilippo affected our entire family?

When you have kids, there are things you just expect you’ll do with them, like going on vacations, trick-or-treating on Halloween, playing soccer or taking dance class. With Sanfilippo, those things aren’t a given. Often we’re not able to do them at all, and at best it’s a struggle. Everyone in our family has to sacrifice a lot to accommodate Leila’s needs. But knowing what the future could hold for us, we appreciate everything that we can do as a family and every memory we make. We know not to take one moment for granted.

The hardest part of being a Sanfilippo parent is …

The emotional struggle. We have to keep living each day, trying to maintain some sense of normalcy. But there’s never a day that goes by that we aren’t fully aware that our child’s health is deteriorating, that our time with her may be limited. The helplessness in knowing that we can’t take away her suffering, that we can’t make it better, is such a deep source of sadness and constant heartbreak.

The biggest misconception people have about being a Sanfilippo parent is…

That we don’t want to talk about it. It’s understandable that it can be an uncomfortable topic, and we don’t want it to be the center of all conversation, but pretending like it’s not our reality makes us feel isolated and not fully seen.

If we could ask just one thing from the world/people, it would be…

Please please please do any little bit you can to help us find a cure, whether that’s donating or sharing to spread awareness. We can’t do this without your support!

Why are we asking you to donate to Cure Sanfilippo Foundation?

Without research we will never find a cure. Without funding we have no research. Cure Sanfilippo Foundation helps make sure that the most promising research gets funded, giving our kids a chance at life.