WELLSTON, Okla. (KFOR) – A 7-year-old in Wellston has ongoing health problems and Oklahoma doctors say they’re unsure what’s wrong.
The boy’s issues started in 2020, and now the family is planning to head to a research hospital out-of-state to look for rare diseases.
The family told KFOR doctors in Oklahoma said his brain and spine are both inflamed, but they cannot find a reason as to why it’s happening.
Easton Phillips has seizures weekly.
Sometimes he has right sided weakness where his arm and leg will stop working altogether.
He is currently on a feeding tube because he lost his ability to eat and stay hydrated – even losing 20 pounds in one month at one point.
His parents also said he sleeps only three hours through the night on average.
“I don’t want to say it’s like a death, but it kind of is. It feels like you had your child, and they died. Their body is physically here, but they can’t even have normal function in any possible way. So, it’s basically like your child is trapped in a prison in their own body and you’re trapped with them because you’re trying your best to do everything you can to keep them safe, happy, alive and well,” said Joy Boyer, Easton’s mother.
Easton was once a healthy kid – playing soccer, playing with toys and learning new words with mom and dad.
Now, things have taken a turn for the worse and he even stopped speaking.
“It’s like he keeps getting more and more symptoms and we can’t find a reason for it… The small things we took for granted; we’ve been doing the things that everyday people can do,” said Boyer. “That’s been our biggest struggle emotionally, is we’ve had so many dreams for him.”
Those dreams, his dad says, are nearly impossible.
“I used to say ‘down, set, hut’ with him and he would get down and do that. He stopped doing that at like 4 years old,” said Davey Phillips, Easton’s father.
The family is exhausted from having to keep a 24-year watch on Easton.
“The most he could handle out in public 20 minutes if we’re lucky, but that’s it. So that’s really hard. Just not being able to have a normal life. That’s the hardest part. It’s like survival mode 24/7,” said Boyer.
“We haven’t gone on a date in three years,” said Phillips.
The family also spent money to baby proof the entire home.
“Everything’s got to be latched. These are bolted down, so this is the only door that will actually get us into the kitchen, but we have all three of these to get us into the kitchen,” said Phillips.
Phillips said Oklahoma doctors are not sure how to help and the Mayo Clinic has suggested a research hospital to check for rare diseases.
“The MRIs are totally clear, there’s no brain damage, nothing that could be a cause… He couldn’t find a reason. He wanted to run genetics again to see if there could be an undiagnosed inflammatory disease and that was negative. So now we’re kind of back to square one,” said Boyer. “He’s has lost almost all abilities over the last three years.”
The family also said they’ve taken a financial hit after countless trips to the hospital and doctor visits. They’re asking for help as they plan to travel to the Children’s Hospital in Boston Massachusetts to get answers.
There’s a GoFund Me if you’re interested in helping with travel costs.
KFOR reached out to Easton’s neurologists, but they were busy Thursday and did not have time to comment.