KIMBERLY, Alabama — It can be hard to get health care that is paid for by the government. Adding a sickness that is rarely seen makes one family say that the system needs to be looked at again.
They told Khari McCrary she had Lafora Disease when she was 14 years old, eight years ago.
A very uncommon genetic disease and a type of progressive myoclonic epilepsy are caused by too much glycogen building up in the body. The deadly disease severely damages nerves, makes people less smart, and takes away their physical skills.
“[Khari] was a smart kid; she took all-advanced classes and played softball, track, and cross-country.” It was normal for her, Khari’s mom, Moniqueca Barfield, said.
Barfield said that Khari then began to have seizures. The first one was when she was 12 years old.
“At first, they said she had generalized epilepsy,” Barfield said.
She told them that Khari was given medicines that helped at first but quickly stopped working as the seizures got worse.
“They were giving her medicine and then taking it away, and I thought, ‘This isn’t working.'” “May we see a specialist?”
At that point, Barfield said she had looked into Khari’s symptoms on her own, but she wasn’t sure if Lafora could be the reason because it is so uncommon.
A specialist finally told her what was wrong with her in 2017. The family learned that this sickness would kill them.
“The kids have 10 years from the time it starts.” Ten years is how long they live. “Why?” was all I could think of. “Why us?” she asked.
When Khari heard the news, the first thing he asked was about softball. She planned to play sports in college and then become a fashion designer. Barfield told the reporter that her daughter kept playing all-star baseball until she could no longer see well.
“After 2018, it started moving quickly,” she said.
Khari is now in “total care,” which means she can’t walk, talk, or feed herself. Through a feeding tube, she gets her food and drink.
“She takes great care.” We take care of her in every way. She’s still Khari on the inside and still happy. I know she’s still there because she smiles.
At this point, she is the only person in Alabama who has Lafora Disease.
“We think there are maybe 500 around the world.” “We are in touch with about 150 of the patients in our registry who are still alive,” Dr. Kit Donohue said.
Donohue is the Science Director for Chelsea’s Hope, a charity that helps people with Lafora Disease.
The disease wasn’t officially put into a category by the International Classification of Diseases until 2023 when it was given an ICD-10 number. Medical ICD-10 numbers are important for accurate diagnosis, billing, and all the different ways that a patient can be treated.
Donohue said this is a big step forward in the fight against the disease. He also said that the real task is to get other people to help get rid of the disease.
Donohue said, “Any company that looks at that and the millions of dollars that go into clinical trials and doesn’t see that there would be enough return on investment to make it profitable.”
Barfield said that Khari’s family has a new problem to solve now that she is 21 years old: getting her moved from services for children to services for adults.
Khari could get supplies, help from home caretakers, and more through Medicaid and waivers. But in Alabama and some other places, when a child turns 21, they can’t get many of these services anymore.
Barfield has a full-time job and is in the army, but Khari’s insurance dropped the day before she turned 21. Barfield said she fought hard to get it back, and it was given back to her after she showed Khari was an adult who couldn’t look after herself.
The other question is whether Medicaid pays for home care.
“Khari has a lot of medical needs, and I have to work.” I’m a single mom of two, so I have to figure out how to get her from youth services to adult services and what she needs, like going from 70 hours a week to 30 hours.
Barfield said she fought to get more hours back for nursing care by going all the way to the government. Some of her goals were met, but she said they’re still waiting for adult services to help with materials.
“The diapers and other things are not coming to us.” She’s been given those things, but they haven’t arrived yet. Since March 18, she’s been 21. “All of those things cost me money that I don’t have.”
Barfield keeps fighting to get Khari covered, but now she has to pay twice as much for what she did when Khari was in state care.
The reason Barfield tells the story of her family is so that other parents in the same situation won’t be as shocked when their child turns 21 as she was.
“I hope that no family has to go through this, and if they do, they know what resources are out there, they know how to speak up for themselves,” she said. “The system needs to be fixed because there is a disconnect that is making things harder for the families.”
Barfield said that she also fights for the disease to be known so that people can see how terrible it is for families. She hopes that this will lead to better care, treatment plans, and finally a cure for everyone with Lafora Disease.
If it’s too late for them to help Khari, I still want to make sure we help everyone we can.
