West Haven, CT — 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 severe neurological condition caused by a rare genetic mutation mostly found in girls. Diagnosed at 15 months old, Julia is severely affected by the disease. She cannot walk, talk or control her limbs, and is unable to move on her own, being carried or 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. She’s unable to do the simplest things like feed herself, get a drink when she’s thirsty or even use the bathroom, without the ability to control her body, or vocalize her need or her wishes, she is 100% dependent on her family for survival.

Julia’s mom was diagnosed with Lupus in May 2018 and it is becoming more and more difficult for her/ others to put Julia in and out of the car and car seat. Julia is getting older, heavier and taller so its becoming more challenging to take her places even to her Doctor appointments.

Julia requires a special car seat as well as the space needed for her wheelchair and medical necessities. The family of six needs to take two separate vehicles anywhere they go because there is not room for Julia, her siblings and parents to travel together in their current vehicle.

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 afford that on one salary.

To be able to afford the wheelchair van the family has formed a GoFundMe campaign to raise whatever they can for a down payment. Donations can also be sent to the family at 501 Island Lane, West Haven Connecticut 06516.

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.

Contact: 
Melissa Ortiz
501 Island Lane
West Haven, Connecticut
USA 06510
www.gofundme.com