New Haven Register (New Haven, CT)
Girl, 10, ‘trapped inside herself’ needs wheelchair van
WEST HAVEN — The family of a 10-year-old girl who can no longer walk, talk or eat solid foods is trying to raise money for a down payment on a wheelchair van so they can keep up every ounce of quality of life she has left.
“We do everything as a family. We try not to exclude Julia from anything,” said Melissa Ortiz, mother of Julia Ortiz, who suffers from Rett syndrome. “If we do anything as a family we have to take two cars.”
Julia Ortiz, 10, a fifth-grader at Carrigan Middle School, suffers from Rett syndrome, a neurological condition caused by a genetic mutation and mostly found in girls.
Those with the condition exhibit symptoms in varying degrees, Melissa Ortiz said, from being able to walk and talk to being comatose.
Julia, a girl with a beautiful smile and dancing eyes, is deeply affected. She cannot walk, talk and has very little ability to move, using a wheelchair that must be controlled by someone else. In school, she has a full-time nurse by her side, as Julia also has seizures, Rett episodes where she totally zones out and is susceptible to aspirations.
The Ortiz family has six members who all pitch in to care for Julia: mom, Melissa; dad, Anthony Ortiz; younger sister, Isabelle Ortiz, 6; older sister, Aariana Richards, 17 and grandfather, Al Longobricco , 75, who moved in with the family when they received Julia’s jarring diagnosis at about 15 months-old.
As for vehicles, they have a car and an SUV — and although the SUV seats seven, with Julia’s special car seat and a space needed for her wheelchair, it really only seats four.
If they go on day trips, longer trips or to sporting and other events around town and all go together, they have to take the two vehicles.
As Julia grows taller and heavier, not having a wheelchair van is making life more difficult by the day.
The Dodge Grand Caravan wheelchair van they have chosen at MobilityWorks is $39,000, but without a down payment, the monthly payments are more than $600 per month and the family can’t swing that on one salary.
The family has never tried to raise money for themselves before — although the Bridgeport Sound Tigers are helping in this down payment fundraising effort — but they have often raised money for Rett Syndrome research and are part of the broader Rett community, actively giving support to other parents in an online support group.
To be able to afford the wheelchair van the family has formed a GoFundMe account to raise whatever they can for a down payment. Donations can also be sent to the family at 501 Island Lane, West Haven.
While the beautiful “social butterfly” Julia has so many limitations — she’s cognitively fine, but “trapped inside herself,” relatives say, what she does have is a close-knit family who are determined to include her in every family trip and activity with the rest of the gang.
Grandpa Longobricco, who does a lot of the heavy lifting carrying Julia to the car - as he’s the one driving to practices or picking the kids up at school — chuckled that she’s getting so big and long that he has to be careful not to hit her head when he puts her in the car.
“We would be able to do things a lot easier,” he said. “a wheelchair van would be fantastic.”
Big sister Aariana, a junior at West Haven High School said, “I think it would make Julia happy because she could do more.”
Melissa Ortiz said that with a wheelchair van the family could run out easier even to do something simple like walk on the beach.
Anthony Ortiz said. “It would make our day to day stuff easier.”
A wheelchair van would include a ramp to push the wheelchair in and it will secure in the van and become the car seat.
Without a special van the wheelchair has to be disassembled for a ride and assembled again in what he family calls a “tedious” process.
Julia can only eat pureed foods. At age 10 she is grossly underweight at 37 lbs., but heavy for family members to carry. Soon she is visiting Boston Children’s Hospital in the hope of getting a feeding tube to help her gain weight, mom said.
Finances are tight in the household, as Melissa Ortiz was laid off from her job a few months ago and Anthony Ortiz is the only bread winner. He is a tech specialist at the Apple store in
New Haven. Melissa Ortiz said she’s returning to school to become a CNA.
Right now, it’s difficult working without a van because Julia is getting heavy to carry and they expect she’ll get heavier after the feeding tube is used.
To add another crinkle into the family’s difficult life, Melissa Ortiz was diagnosed months ago with lupus, a painful auto immune disease that she has under control with meds, but still gets flareups. In her case she needs to keep going because Julia needs someone with her all her waking hours.
Julia, described by mom as a “social butterfly” is active in the community — including as a cheerleader for the Seahawks spirit team — and is popular at other local sporting events. She also is a die-hard hockey fan with a particular love of the Sound Tigers, with which the family is involved.
The family first noticed there might be a problem when Julia was about eightmonths-old; she had been developing, then lost some abilities.
By age 13 to 15 months the regression was more pronounced.
The couple took her to doctors, she had tests and they couldn’t find an answer at first until one doctor with a keen eye took a look at her and thought, “Rett.” The test was positive.
“It was going to be a difficult road. We knew that,” Melissa Ortiz said. “They said, ‘This is what she has, but we don’t know what it’s going to be.’ ”
And still, “We have no idea where it’s going to go.”
Julia communicates through an eye gaze device using pictures and once she reads may be able to communicate in sentences, dad said.
Her parents said they’ve been told Julia’s cognitive abilities are fully intact. They describe it as her mind working without being able to connect with her body.
“It’s like she’s trapped inside herself,” her grandfather said.
The family says Julia enjoys television — the Disney channel and football with grandpa — and there is no shortage of love for the little girl who gets held, carried and kissed like an infant.
Youngest daughter, Isabelle, 6, who escaped Rett syndrome, loves her big sister Julia to bits and is known as her “little nurse.”
“She’s a very loved little girl,” both at home and in the community, Melissa Ortiz said.