New Walker Will Help Those With Mobility Challenges
When Orange resident Anna Cerilli Zitnay was pregnant with her second daughter, her doctors recommended she terminate the pregnancy, saying that the baby would not survive. Instead, Zitnay continued to undergo testing, which revealed that the baby was not what doctors termed ‘incompatible with life.’ No indication of any health issue showed on subsequent testing throughout her pregnancy. Serena, now three years old, was, however, born with a condition called hypertonia, which causes poor muscle tone.
“She was very weak. I made urgent doctor appointments for her all through my maternity leave, knowing something was not right. At seven months old, I was still carrying her like a newborn,” Zitnay says. Serena has been receiving care through the Birth to Three early intervention program since she was seven months old. She undergoes physical therapy, speech therapy, occupational therapy, and she has hearing aids. She has undergone many rounds of testing, including brain MRIs, biopsies from her legs, and genetic testing.
“It was difficult to cope with. It just wasn’t part of the plan,” she says, admitting that having that thought made her feel guilty. “It’s sad that some people can’t afford to have the testing done. We have some answers now, but no diagnosis. She fatigues easily because it is so much work to keep herself upright and to move without the muscle tone.”
At the same time, Serena is a sweet, loving and happy young girl. “As far as she knows, she has the best life ever,” Zitnay says. But as Serena gets older, the family is faced with more challenges with mobility being one of the toughest.
“There is nothing out there that is mainstream compatible to help her get around,” Zitnay says. “She’s using a walker and we have tried different ones, but they are so expensive, they can be over $1,000 and many of them don’t even come with wheels on the front. They’re uncomfortable and are not made for children with Serena’s condition. They look like medical devices.”
Feeling frustrated, this past summer Zitnay decided to launch a corporation to help fund the development of a new pediatric walker that would not only benefit her own daughter, but also thousands of others who have special needs. Called Darling June, the corporation is named from the middle names of both of Doug and Anna Zitnay’s daughters, Emma, 5, and Serena.
“While it was inspired by Serena, this product is going to serve so many children, providing access to mobility options that promote safe walking, and decrease the isolation and stigmatization that so many young children endure,” Zitnay says. “I want to make something fun. There’s no reason these things can’t be awesome looking.”
She has established a public benefit corporation, which is similar to a non-profit in that it has a social impact. In late October, Zitnay met with faculty from Yale’s Center for Engineering Innovation and Design to talk about creating prototypes. She is working with a designer and a mechanical engineer and although she doesn’t have a set date for a walker to come to market, plans are moving quickly.
Darling-June’s mission is to increase access to mobility options for children with special needs. Zitnay looks to not only take care of her own child, but also children like her, who may have hypertonia, cerebral palsy or any other condition that requires assistance with mobility.
“I know this is possible,” Zitnay says. “The engineer and designer I have been working with have been very impressed with the speed in which I have achieved milestones and recognize it is my passion that will drive this to successful completion. Financial gain is not the driver that will make this successful. The mission and passion will make this successful. This is the project that stands between children and dignified, functional mobility.”
For more information, please visit https://youtu.be/cQ0-imh2p2I. To donate toward the development of the new pediatric walker, please visit https://www.gofundme.com/DarlingJune-the-walker-project.
By Melissa Nicefaro – Orange Town News Correspondent