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A Love for the Road: How one group is helping a child with a genetic disorder continue to do what she loves

Evie Harper
Posted at 5:44 PM, Sep 24, 2021
and last updated 2021-09-24 18:57:57-04

CAPE CORAL, Fla.  — Seven-year-old Evie Harper was born with a rare genetic disorder caused by a chromosome deletion, or defect in a gene, according to Boston Children's Hospital.

Her Dad, Jason Harper said it's called Phelan Mcdermid Syndrome.

"Evie doesn't communicate really at all, she can’t speak she cant crawl she can’t sit up she can’t walk," said Harper.

Harper said despite his daughter's limits to communicate, there is one thing he knows she loves.

“And her second love beyond scooting around the house is riding in our van,” he said.

Harper told Fox 4 that her love for the open road has now become a safety issue.

“She is a maniac. She just flaps her arms and legs the entire time, a matter of fact, the only time she is upset in the car is when we come to a red light,” said Harper.

Evie's father Jason and her mother Lindsey have no desire to stop their daughter's celebrations but says her excitement can make it difficult to place her inside the van and at seven years old- the car seat she has to sit in, does not keep her safe.

“It is just a challenge that they have suffered silently with. It’s nothing they have ever really talked about,” said Tristan Starbird, a family friend who works with Jason Harper at Trademark Roofing.

Starbird said Harper's struggles did not go unnoticed, so after coming together with a few other employees--they decided to purchase a brand new wheelchair-accessible van.

“I drew a thermometer all the way up to $75,000 and I looked at that and I said I don’t know, I don’t know how we are gonna do it but we can’t even begin to get there unless we try,” said Starbird.

“You gotta love Tristan you gotta love John (fellow employee), they are like no, no we are not doing that if it has one mile on it that’s one too many,” said Harper.

In an effort to reach the $75,000 price tag they also set up a go-fund-me account that has raised over $30,000 and found a donor that will match every dollar donated for $20,000 more.

“For me personally, you know, it’s something that you hope that you can do for your kid and then you know that it seems like a task that you can never pull off, and then you have people come around you and say no we can do this together,” said Harper.

In the meantime, he says family car rides have been limited to things like doctor's appointments.

Although, word on the road is that it’s not a matter of if but when they reach their goal.

“I told Lindsey the other day, she needs to go pick out a van, is what she needs to do,” said Starbird.

A link to the go-fund-me can be found by clicking here.