The sweetest moment of this year’s Mattituck Lions Strawberry Festival was over before the carnival even began. Before the fireworks, the flashing lights and the whirl of carnival rides, the fairgrounds were briefly transformed into something quieter, and more powerful.
For a couple hours last Thursday afternoon, the entire carnival was reserved for the families of children with special needs — those navigating sensory sensitivities, living with disabilities or grieving the weight of recent loss. The lights were dimmed. The music turned down. The rides slowed to a gentle spin.
“Everyone’s there because they’re maybe in a darker place,” said Adam West, one of the organizers of the event. “Or maybe their life is not as cheery as it should be every day.”
The moment of calm was designed with love and intention. The initiative, now in its second year, is called ‘Memories for Morgan’, in honor of West’s daughter, Morgan Riley West, who passed away in 2018 at just nine years old.
When she was two and a half, Morgan was diagnosed with diffuse intrinsic pontine glioma (DIPG), a rare and aggressive brain tumor. Doctors gave her a year to live. She lived for six and a half more. Over that time, Morgan became a patient at St. Jude’s Children’s Research Hospital, and her family experienced both the pain of uncertainty and the power of kindness.
The Make-A-Wish Foundation helped make some of the child’s dreams come true, including a trip to Disney World and the chance to ring the opening bell at the New York Stock Exchange.
Those memories — fleeting, luminous gifts from strangers and foundations — became the blueprint for ‘Memories for Morgan’.
“We cherished any little event we had,” said Nikki West. “We have great memories. And we always talked about creating something similar for other kids, whether they had an illness or a disability or even sensory issues. We wanted to create something that would give these families a sort of escape from reality for a little bit of time.”
The event also honors the siblings of children with special needs or illnesses — the kids who often find themselves in the shadows.
“That’s something that I think a lot of people don’t realize,” she said. “The siblings sometimes take a back seat, and these kids deserve some special time as well.”
Morgan Riley West. Above, her father Adam West is pictured with Erin Van Gelder.
The spark for the event came from Erin van Gelder, a pediatric occupational therapist and friend of the Wests. One year, she was at the Strawberry Festival with her own child when she noticed one of her students — physically and cognitively impaired — visibly overwhelmed by the lights, sounds and crowds. He wasn’t engaging at all.
“Knowing what the Lions are about with the Gift of Sight and giving some level of independence to people,” van Gelder said, “I thought that we were not doing the best job of capturing that demographic in our local community.”
Last year, the first run of ‘Memories for Morgan’ was limited, with just 16 families invited while the organizers worked to figure out what accommodations might be needed — from transfer assistance to adaptive equipment or more sensory-friendly options.
This year, they expanded the invitation to include preschoolers and a broader range of physical and sensory needs, and 30 families attended.
“We wanted to make it as safe and supportive and inclusive as possible,” Van Gelder said. “Not just so they can enjoy the rides as individuals, but we wanted them to enjoy them as a family.”
For Adam West, who has channeled his grief into action through his work with the Mattituck Lions, the festival is now more than a community tradition — it’s a legacy.
“It affords me the opportunity to give back to the community in a way that I would never be able to do on my own,” he said. “As a collective group, we’re able to give tremendous amounts of money back to the local community and to a lot of other organizations, like St. Jude’s, the American Cancer Society, the Guide Dog Foundation.
“So, in my situation, going through what I went through in the past, [the Lions] gave me a different outlook on life.”