Quick Take:

Lisa Harvey-Duren lost her beloved daughter Kayla nearly five years ago to a genetic condition. During her short life, Kayla radiated joy and fought the odds to survive and thrive, Harvey-Duren writes. Kayla could have benefited from more inclusive playgrounds for children with special needs. Now, the City of Capitola is set to create one at Jade Street Park and nonprofit County Park Friends has launched a $1 million fundraising campaign to help cover the $1.82 million cost. Despite Americans with Disabilities Act regulations, most playgrounds are not accessible for kids with disabilities. “Can you simply imagine how discouraging that is for a child and their family?” Harvey-Duren says.

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If my daughter, Kayla Michele Vittek, had lived, she would have turned 18 this year.

Kayla was a sweet, kind, funny and compassionate child who loved making people laugh and spending time outside. She was lucky to live in a place like Santa Cruz that offers many inclusive activities for special needs kids, like Shared Adventures, Ride A Wave, Challenger baseball and soccer and Muscular Dystrophy Association camp.

In all those places, she had the support she needed to feel the wind whip her face and experience the thrill of just being a kid.

I wish more of her life was spent that way. That is why I am now working to help create a playground at Jade Street Park in Capitola for kids like Kayla.

Lisa Harvey-Duren with daughter Kayla, who was born with congenital myotonic dystrophy
Lisa Harvey-Duren’s daughter Kayla was born with congenital myotonic dystrophy. Credit: Via Lisa Harvey-Duren

We found out Kayla was different on the day of her birth, when she was diagnosed with congenital myotonic dystrophy (cDM1), a complex genetic disorder that would limit her life in numerous ways. She spent 105 days in the neonatal intensive care unit and nine months on a ventilator with a tracheostomy and using a feeding tube. Kayla came home for the first time at almost 4 months old transported in an ambulance.

It was a terrifying time for our family, as the doctors gave her a grim prognosis.

But Kayla had different plans and quickly began to show incredible amounts of determination and strength. For a long time, I wasn’t sure she would survive the obstacles that faced her, but she did.

Each time she overcame an obstacle, I got stronger. She made me fight harder and work to give her the best opportunities possible.

Her doctors didn’t expect her to see her first birthday, but she lived 13 years and eight months full of amazing adventures and lots of love. She defined joy for me. I sometimes wished that I could bottle up the joy she emanated. I knew I would need it later.

Kayla loved school and thrived with lots of support from a one-to-one aide who helped her throughout the day.

At every milestone, she defied the odds — with a lot of help from family, friends, therapists, teachers and her medical team. Hers was an amazing story that I documented and wrote about, both out of awe for her accomplishments and out of grief at losing her.

Kayla outside New Brighton Middle School in Capitola
Kayla fought for every milestone she reached. Credit: Via Lisa Harvey-Duren

In her lifetime, Kayla faced and overcame many physical challenges, including walking and talking. She used orthotic braces to help with walking, and at times needed a wheelchair to assist her when her muscles were tired. Kayla rarely complained about how hard things were for her.

I called her my “can-do girl.”

Kayla would have turned 18 on July 28, one day after the Capitola City Council approved the design for a universally accessible playground, Treasure Cove at Jade Street Park. The plan will update the dated playground and is the result of months of public input on what play elements our kids need.

The plan for Treasure Cove at Jade Street Park in Capitola.
The plan for Treasure Cove at Jade Street Park in Capitola. Credit: Via County Park Friends

It won’t, as some in the community fear, overhaul the entire park. It will just be one element in a park so many love.

It’s the kind of park Kayla would have adored.

The playground, designed by Verde Designs, will have a marine and shoreline theme and will offer opportunities for physical exercise, sensory stimulation and social connection for children of all abilities.

It will include an area for children ages 0-5 with a play ship as a centerpiece and an active space for children 5-12 with a lighthouse-themed main play structure accessible via ramps. Universally accessible equipment such as bucket swings, a wheelchair-accessible merry-go-round and a cozy dome will be included. The playground will also have rubberized surfacing throughout to provide an inclusive, easy-to-access environment for all.

Kayla found such happiness gliding, swinging and sliding. As she got older, it became harder for her to safely play at a playground and it became difficult to find one that suited her needs.

Kayla and her mom enjoying fun on ice.
Kayla and her mom enjoying fun on ice. Credit: Via Lisa Harvey-Duren

I’m so pleased this park will give that opportunity to other children — and that relief to their parents.

One in 10 children in the U.S. has a disability, and many, like Kayla, often can’t use traditional playgrounds. This isolates them even more from others, which is terrible because like all kids, they long for connection and inclusion. Parents, too, need to feel they are offering their children what they crave.

To raise money for the project, the Capitola City Council approved a public-private partnership with the nonprofit County Park Friends (CPF). CPF has launched a fundraising campaign to raise $1 million by January toward the estimated $1.82 million needed to build the park. The City of Capitola has designated $475,000 for the project and is looking for private and public funding sources for the rest.

So far, CPF has raised nearly $100,000.

Treasure Cove at Jade Street Park was inspired by the success of a community-led effort to create LEO’s Haven at Chanticleer Park, which opened in Live Oak in 2020. LEO’s Haven has become one of the most heavily used playgrounds in the county, clearly showing that when public spaces are designed with all abilities in mind, thousands of children, parents, grandparents and caregivers will benefit.

While the benefits for all who visit and play at universally accessible playgrounds are tremendous, these inclusively designed spaces are still not the norm in parks. The Americans with Disabilities Act, while groundbreaking, does not require playgrounds to be built to universal design standards.

For example, wood chips are still commonly found at playgrounds, although they are impossible for someone in a wheelchair to navigate. Equipment, too, is often too hard to access or dangerous for those with special needs.

Can you simply imagine how discouraging that is for a child and their family?

The good news is that forward-looking communities have tried to correct this problem. In addition to LEO’s Haven, there are universally accessible playgrounds in Morgan Hill, Salinas, San Jose and the one soon to be built at Ramsay Park in Watsonville. All are within two hours of Santa Cruz.

The City of Capitola is also planning to upgrade the Jade Street community center and surrounding park, which sits on land that is leased from the Soquel Union Elementary School District. This is all terribly important and exciting for our community.

To learn more about the playground, please come to the design reveal and adaptive family fall festival at the Capitola Community Center at 4400 Jade St. on Saturday, Oct. 28, from 2-4 p.m. You can speak to the people behind the effort, look at the playground’s design, and if you’ve got children, they can engage in fall festival activities like pumpkin painting and art projects.

For my daughter Kayla, this playground will not come in time. But for the estimated hundreds of thousands of children who will benefit from it in the next quarter of a century, it will.

To me, that is Kayla’s legacy. It is the hope of every parent that their child’s life has an impact on others.

Lisa Harvey-Duren is a volunteer working with County Park Friends to raise funds for Treasure Cove at Jade Street Park. She works as a patient advocate for a U.K.-based pharmaceutical company working to bring treatments to children like Kayla living with myotonic dystrophy.