A 14-year-old Grayling girl with severe autism, and epilepsy, has been chosen to be part of a national study on seizures at the DeVos Children’s Hospital.
And now, her family is asking for help to get her there.
Rebecca Fleming, or Becca for short, was diagnosed with autism before she was even a year old. For the most part, Becca is non-verbal, and as she got older, she started having seizures. Her mom, Wendy, said it’s common for kids with autism to also epilepsy.
As Becca got older, the seizures got to the point where she was having 100 a day.
“They were controlled for a while with medication, but now she has focal seizures daily that we see. But according to one of the EEG that she had at DeVos, she has what’s called subclinical seizures that you can’t see. But they’re in her brain,” said Wendy.
Becca is scheduled to have surgery in April to have a device called an RNS implanted, which is like a pacemaker for the brain.
The Stewarts hope the device will reduce her seizures and improve her quality of life.
“They affect just about everything in her life. She’s far less active than she used to be. She sleeps a lot, and she has more meltdowns,” said Wendy.
Wendy said she’s ecstatic Becca is part of the study, but it’s expensive.
The Stewarts said they’re on a limited income and never knowing when a seizure may hit makes caring for Becca a full-time job,
They started a GoFundMe to help the monthly trips, costing about $400 a day, which can add up fast.
“There’s been days, she said, haven’t before school, so she wasn’t able to go to school, you know. So yeah, for her to work is not, it’s out of the question,” said Craig, Becca’s stepdad.
Wendy said the operation is expected to reduce the seizures by up to 75%, greatly improving the quality of life.
“They did mention that a lot of her cognitive behavior and speech could come back because that’s where her seizures are coming from. So just more progression and to have her learn as many life skills as possible,” said Wendy.
The Stewarts also said they’ve been in contact with the Make-A-Wish Foundation. The organization plans to do a room makeover later in the year for Becca after she recovers from surgery.
