By Pam McLoughlin, New Haven Register November 21, 2018
Three-year-old Serena Zitnay is a bubbly, beautiful blonde with curls, pink glitter hearing aids and butterfly ankle braces, but, oh, that pediatric walker of steel alloy has got to be changed, her parents said.
The metal walker, which Serena uses to get around because of a condition that leaves her with poor muscle tone, has sharp edges that scrape and bruise her, causing her to lose confidence in any progress, and is the antithesis of anything that would engage peers to foster Serena’s social development, her mom said.
Serena’s not alone, and with emotional and financial support from the community, her parents are close to changing the world for their daughter and other children with moblity issues.
“They look cold, medical, they isolate and stigmatize,” Serena’s mother, Anna Cerilli-Zitnay, said of all the pediatric walkers on the market. “Clearly no one whose had experience with kids designed it.”
So the Zitnays have hired a mechanical engineer and designer to create a prototype of a kid-friendly walker, expected to be completed soon.
She and husband Doug want them to be available to all who could benefit, but can’t afford the pricey devices that often are not covered by insurance.
The couple has started a Gofundme campaign to manufacture the first round, with a goal for their Public Benefit Corporation of raising $200,000-$300,000.
They’ve already raised some $30,000 in a few weeks for “Darling June — the Walker Project.”
Darling is Serena’s middle name and June is the middle name of their other daughter, Emma, 5.
Not only will the new type of walker be safe, fun, and look like something you’d find in the toy aisle, but the walkers will have qualities such as being able to move across varied terrains.
“Right now she walks into the room with the walker and it defines her,” Anna Zitnay said. “These devices, they define, rather than the child having the option to define themselves.”
Anna Zitnay did her research and there are no walkers that fit her child-friendly criteria. Serena’s walker — a simple looking piece of metal — was $1,000 new; the Zitnays said they were lucky to get it passed down from someone in the community.
Anna Zitnay said she doesn’t believe anyone has bothered to make a better walker for children, because, “This population is so vulnerable that they don’t have a choice.”
She said it’s difficult to know how many kids need pediatric walkers, but she knows it’s in the tens of thousands. She said 8,000 kids per year are diagnosed with cerebral palsy alone.
“There are children who can walk with walkers, but don’t have access and are put in wheelchairs,” Anna Zitnay said. “So many kids want to walk and it’s so not right.”
Doug Zitnay added, “Their legs aren’t getting stronger from sitting.”
Serena has hypotonia, or low muscle tone, which is more like a symptom, due to a dysfunction of her mitochondria, which control energy production. Serena does not have muscular dystrophy, her mom said, and despite having had every genetic and other test possible, they haven’t identified what is causing the dysfunction, but will continue testing as more becomes available.
Serena runs out of energy quickly and is a risk for heart failure. She has hearing loss, speech delays because of that and they cannot yet tell if she is cognitively delayed, because she got a late start on hearing.
But there are many fun things she can do and loves, including dancing, music, books, baby dolls — and a big sister who helps Serena all the time.
“We celebrate everything she is — not what she’s not,” Anna Zitnay said of Serena.
Theirs is anything but a sob story. “Emma shows her how to be kind, how to be goofy, how to share,” Anna Zitnay said.
Doug Zitnay notes when talking about Serena’s bland metal walker that Emma has a pink Barbie bike with tassles and a basket. He wants Serena’s walker to have personality.
The family has always chosen fun, Anna Zitnay said. During her first year, Serena had a plain white helmet for reshaping her head and the Zitnays brought it to an auto body shop and had it shrink-wrapped with a Dr. Seuss print. Now she has pink glitter hearing aids and a set of pink and butterfly ankle braces.
Although Zitnay had a scare during pregnancy with a screening test result that was incorrect, Serena got a clean bill of health at birth.
But Anna Zitnay noticed her youngest had low muscle tone and kept asking the pediatrician about it, but was told not to worry because all kids hit milestones at different ages.
Zitnay said Serena couldn’t lift her head at 7 months old, couldn’t sit up and choked at night.
She self-referred to the Birth to Three program and received lots of services after an evaluation. From an early age Serena has had physical therapy, occupational therapy, speech, a teacher for the hearing impaired and more.
“We entered into the world of walkers,” Anna Zitnay said.
Serena attends pre-K at Mary L. Tracy School and is making progress.
Anna Zitnay, employed at Yale New Haven Hospital as an operations leader for the abdominal transplant clinic, said Serena has had surgeries and been to specialists all over the country and has settled with a “Great team at Yale.”
Doug Zitnay, who has an urban forestry degree, left his job to open his own company, Darling Gardens LLC, so the family could have flexibility for Serena’s appointments.
Anna Zitnay said her dream is for Serena to appear on The Ellen Show. “I want her to walk out on the Ellen show using the prototype,” Anna Zitna said. “I love Ellen. She loves kids, she loves animals and good causes.”
Doug Zitnay said he’s so proud of his wife, as, “She had a vision and she has not waffled.”
|For more information, the Zitnays can be emailed at firstname.lastname@example.org|
Source New Haven Register