NARS1 Family Stories - The Anderson Family, USA

James is 34 years old and lives at home with his parents, Nancy and Bud, in Bedford, Massachusetts. He’s the middle of three children, with an older sister, Lauren, and a younger sister, Taylor.

He is currently the oldest known member of the NARS1 community.

Family life looks different these days than it once did. Their house used to be busy and loud when the girls were younger. Now it’s quieter, with just the three of them at home day to day. But what hasn’t changed is the joy James brings to the people around him. He’s happy, social, and full of personality.

“James has never met a stranger.”

James loves being out and about, especially when it involves sports or music. He counts down the days to college hockey games, where he cheers loudly, claps longer than anyone else, and keeps a close eye out for the team mascot, Rowdy, who often comes over to say hello. He also enjoys local basketball and football games, especially when he gets to see friends and familiar faces.

Music is another big part of his world. He has two favorite Irish bands, and when they’re playing locally, you’ll usually find him there — clapping, singing along, and sometimes even being invited up to “sing” a song with them.

The early days

James was born with microcephaly and had difficulty gaining weight early on. From the

beginning, there were signs that something wasn’t quite right. Weekly visits to the

pediatrician became part of life, and by 10 months old, James had his first neurology

appointment after missing key milestones.

At that stage, everything was uncertain. Scans were inconclusive, and James was labeled globally delayed. Like many families, Nancy and Bud held onto hope that with the right support, he might catch up.

He began Early Intervention, with physical and occupational therapy both at home and in the hospital. Progress came, but slowly. James crawled at 15 months and walked at 21 months, and over time it became clear that the gap between his age and development was growing.

Over the years, James was supported by neurologists, orthopedists, and gastroenterologists, alongside speech therapy, OT, and PT throughout his school years. He moved through different educational settings until he aged out of the public school system at 22.

Despite all of this, a diagnosis remained out of reach for many years.

It wasn’t until James was 29 that the family finally had an answer.

“We thought we would never have one.”

The diagnosis came from a geneticist at Boston Children’s Hospital. Once they began reading about NARS1, everything started to make sense.

“Once we read about NARS1, it was incredibly validating. So many of the issues James had over the years were connected to NARS1, and suddenly things made much more sense to us.”

And just as importantly, it led them to the NARS1 community.

“We finally met families online with children like James. We felt supported and met the most wonderful families!”

Day-to-day life

James now attends a day program from 9 to 3, with transportation provided. At home, he needs support with most aspects of daily life, including dressing, eating, mobility, and personal care.

Routine plays a big role in his life. Things tend to follow a familiar rhythm, and he finds comfort in knowing what’s coming next.

Mornings start early. With support, he gets ready for the day before settling down with breakfast and the sports news. Evenings are slower — watching TV, often Seinfeld (which he calls “mommy’s show”), or looking through videos and photos on his iPad. One thing that stands out is how much reassurance James needs around what’s coming next.

“He asks over and over what’s happening tomorrow and what he’ll be doing. No matter how many times we answer, he still asks again.”

It’s part of his routine, and part of how he makes sense of the world around him.

Weekends are a little more flexible, but still shaped by the same need for structure and familiarity.

The challenges

Some of the hardest parts are the constant demands of everyday care. James can’t be left alone, which means someone is always with him. Over time, this has become normal for the family, but it can still feel isolating, especially as life naturally changes for others around them.

“We don’t travel or go out without James. While we’ve adjusted to that over the years, it can still feel challenging and isolating at times.”

There are also ongoing care challenges, including toileting and communication, which require constant awareness and support.

Looking ahead brings its own weight. Nancy and Bud are now thinking about the future in a very real way — what happens when they are no longer able to provide the level of care James needs every day.

“We know no one will care for him quite the way we do, but at some point he will likely need to transition to a supported residential home. That will be an incredibly difficult transition for everyone involved.”

More recently, they’ve also noticed changes in James’ behavior. New or unfamiliar situations can cause anxiety, and it takes time, patience, and reassurance to help him through those moments.

What brings joy

Despite the challenges, there is so much joy in James. He has a huge smile and a way of bringing people together. He makes an impression wherever he goes, whether that’s at a game, a restaurant, or just out in the community.

“You cannot help but feel happy when you are around him with his huge smile and love of life.”

Nancy describes him as someone who brings out the best in people.

One memory that stands out is a simple night out with friends at a restaurant where one of his favorite bands was playing. Seeing other people connect with James and genuinely enjoy being around him stayed with Nancy long afterward.

“Those memories help us so much when things get tough.”

Support and community

Support has come from many places over the years — family, friends, and the wider community.

James is well known locally, often recognized at games and greeted with high-fives or a quick hello. His extended family has also played a huge role, raising funds and supporting initiatives that make a difference not just for James, but for others too.

More recently, finding the NARS1 community has been incredibly meaningful.

“It feels like we’ve known them for years.”

Meeting other families — people who truly understand — has brought comfort, encouragement, and a sense of connection that wasn’t there before.

Looking ahead

Like many families, Nancy and Bud hold both hope and uncertainty at the same time. Their biggest hope is simple: that James is happy, safe, and supported, now and in the future.

When asked what they would say to another family just starting this journey, their message is honest.

“I think it’s important to allow yourself time to grieve when those feelings come up, and not feel guilty for feeling that way. It is a loss — it’s not the life you imagined for yourself or your child — and you’re allowed to grieve that.”

But alongside that, there is also so much to hold onto — the moments, the connections, and the impact along the way.

“He has made such a positive impact on all of us, and we feel incredibly blessed that he is our son and brother.”