When the pandemic hit, isolation and lost routines were blamed for Merrick's regression—and at the time, it seemed to add up.
to see more of our trusted coverage when you search. He was always smarter than he could fully show us. He could name dozens of animals, had an encyclopedic knowledge of Monster Jam trucks and Pokémon, and could sit for ages completing 200-piece puzzles.
Family & ParentingHe was bright, curious and social in his own way, but he struggled to communicate and navigate the world in the ways people expected.. He had speech delays, sensory needs and struggled with transitions. Sitting still was hard and social communication didn’t come naturally. Getting the diagnosis was emotional and confusing, but after the initial shock, I told myself something important: he was still the same happy little boy.
The diagnosis helped in some ways. It gave us language for what we were seeing. It opened doors to speech therapy, occupational therapy, applied behavior analysis and school support. We threw everything we could at helping him thrive.
I remember sitting in appointments, listening to professionals talk about Merrick and feeling like they weren’t seeing the full picture. At one point, I even argued with the diagnosing doctor, who assumed I was in denial. I wasn’t. I wanted to accept the diagnosis.
I wanted to do everything right for my son. Around age five, Merrick began to regress. At first, it was subtle. Certain skills became harder.
His language shifted. Tasks that once came easily—fine motor skills, focus, communication—began to slip away. At the same time, the pandemic hit. Like so many families, we were isolated, cut off from support systems and routines.
We were told the regression could be linked to that disruption. It made sense—on paper. Late at night, when I couldn’t sleep, I would find myself Googling questions no parent wants to ask: Why is my child losing skills? Is regression normal inAutism explained some things, but not the whole picture.
Not the regression. Not the gut feeling that something else was happening to Merrick. Looking back at old videos is still one of the hardest things I do. I used to watch them thinking, I know he can do that—I just need to find it again.
Now I know some of those skills are gone. It came through a patient portal—clinical, impersonal, just another test result on a screen. Merrick had Sanfilippo syndrome. Sanfilippo is a rare genetic disorder, often described as a form of .
It is progressive. It slowly takes away everything—speech, mobility, independence—and ultimately, a child’s life. By the time Merrick was diagnosed, he was 10 years old. That is something I struggle with every day.
The “what ifs. ” The guilt.or found answers sooner. I still don’t know what we could have done differently, but I carry it anyway. Merrick is still here.
He still understands me. I tell him “mom loves Merrick” multiple times a day. I hope—almost more than anything—that we can hold onto that connection for as long as possible. Day to day, he needs constant support.
He has a one-on-one aide at school and a team of specialists helping manage everything from his development to his neurological health. He is learning to use an AAC device to communicate. Transformers, Pokémon and anything to do with Monster Jam. He wants to be active—riding his scooter, climbing, being outside, being with people who love him.
And yes—he can also be incredibly challenging. There are nights he doesn’t sleep for days. There are moments when his impulsivity means he lashes out. Both can be true at once: overwhelming and beautiful.
A gene therapy called UX111 is currently going through the FDA approval process. We’ve been told Merrick may be able to access it if it’s approved. Every day, we wait. Every month matters.
With this disease, time isn’t neutral—time means loss. In the meantime, we’re doing everything we can to slow progression using what’s been learned from previous trials. I want other parents to trust themselves. If something doesn’t feel right, ask more questions.
Push for answers. Seek second opinions. Advocate—even when it feels uncomfortable. I know how lonely it is to sit up at night searching for answers.
I know the guilt of wondering if you’ve missed something. But parents often know when something isn’t right. We share them because we love our children so fiercely that we will do anything to help them. This isn’t just about Merrick.doesn’t have to wait as long for answers—and that when treatments exist, they reach children before it’s too late.
Nancy and Matt Rubino document Merrick's diagnosis of childhood dementia on social media . Approve Hope Now is a parent advocacy platform dedicated to raising awareness and advancing gene therapy access .
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