By Lisa Harvey-Duren
Kayla could have benefited from more inclusive playgrounds. Credit: Via Lisa Harvey-Duren
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.
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.
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| 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.
Read article in the Santa Cruz Lookout
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