Edmond Siblings With Rare Disease Raise Money For Accessible Van

Thursday, June 29th 2017, 10:31 pm
By: News 9

An Edmond family is turning to the public for help as they raise money for a wheelchair-accessible van. The brother and sister both have a rare disease that targets their motor functions, and it is getting harder for their parents to get them around.

The Ramos family currently uses a standard van to get around, but now with both children in their 20s and the parents in their 50s, lifting them into the seats has become quite the task.

Yesenia Ramos, 20, cherishes her independence when she can get it.

“I stopped walking at age 12 and it just kept progressing from there,” she said.

She and her older brother Aaron, 25, were both diagnosed with neuromuscular disease Friedreich's ataxia when they were in elementary school. 

“We started noticing they couldn’t stabilize. They couldn’t stay on their feet," their oldest brother Marcos said.

Friedreich’s ataxia is a genetic condition, although they do not know of anyone else in their family who has it. The disorder attacks their muscles slowly over time, trapping their mind in a body of quicksand.

Stress and depression led Yesenia to drop out of high school.

“She’s real stubborn,” Marcos said. “She doesn’t like to get help from anybody.”

It makes it that much harder when the siblings have to travel to their many appointments, sometimes as many as four a day. Their father, a carpenter, spent thousands of dollars, on top of what insurance pays, modifying their home to accommodate the motorized wheelchairs. He needs thousands more, though, to buy a wheelchair accessible van.

“We have a lot of special equipment, but this one in particular would help my parents a lot,” Yesenia said.

Yesenia decided to reach out to her community of friends by creating a Gofundme page.

A new van would allow Yesenia to get out and have fun, and the Ramoses could finally resume their annual trips to visit family in Mexico, a 15 to 18 hour drive that they have had to put on hold in recent years.

To help the Ramos family with a donation, click here.