Chesterfield kids diagnosed with rare genetic disorder struggling after car crash busts wheelchair
Chesterfield family sees struggles swell after losing wheelchair van
For the Hicks family, a wheelchair accessible van was a godsend. But since it got totaled in a crash, Emmy and her kids Loretta and Jackie, who are diagnosed with a rare genetic disease called Leigh's, everything has been harder. You can help donate to their MiABLE accounts at https://www.ugiftable.com and entering their codes: Jackie's is 44P - E2N and Loretta's is N6E - F89
CHESTERFIELD, Mich. (FOX 2) - Emmy Hicks said she was lucky when the van she was driving in crashed and left her with only bumps and bruises. But the fallout from losing her family's transportation has only made life more difficult for Emmy and her two kids.
The van was wheelchair accessible and made driving to doctors' appointments much easier. Both 8-year-old Jackie and 6-year-old Loretta were diagnosed with a rare genetic disease called Leigh's.
"Symptoms also include just extreme pain," said Emmy, as she lifts Jackie out of his wheelchair.
She's worked to give her kids in Chesterfield as good a life as she can. Each had their hair dyed their favorite color. They also love Zoboomafoo, the show with a very vocal lemur.
But Leigh's disease can make a normal life difficult. It affects the nervous system and can make mobility difficult while causing limb stiffness. There is also a decline in cognitive function.
For Jackie, his Legih's has progressed further. He now has a hard time controlling the left side of his body and needs a baclofen pump that drips medicine into his spine. It protrudes from his body when he lifts his shirt.
The family calls it his Iron Man shield.
"It has a lot of power," said Loretta.
"It has so much power it might break the camera, it’s so powerful," said Emmy.
Loretta and Jackie Hicks.
Emmy has managed to rely on family and friends to get around, using vehicles they lend to them. But with so many medical appointments and no van that can easily take the kids, just getting to the office is a struggle.
Making it even tougher is the crash also left Jackie's electric wheelchair busted, leaving him with much less independence.
"Now getting out of the door is a half-an-hour longer because I’m scrambling, making sure that we have that stuff just in case of an emergency or somebody has to go to the hospital," said Emmy.
Emmy is beyond grateful for the community's support, but hopes she can raise money to purchase a new wheelchair.
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You can donate to help out Jackie and Loretta through their MiABLE accounts.
How it works is someone goes to the website https://www.ugiftable.com. From there, someone can type in a code that leads to either Jackie's or Loretta's account.
Jackie's code is 44P-E2N.
Loretta's code is N6E - F89