Temple boy, 5, battling life-threatening condition
TEMPLE, Texas (KWTX) – The family of Michael Kelley, 5, who is diagnosed with a brain condition called Chairi Malformation, is embarking on a new journey they did not expect right before the holidays.
EDITOR’S NOTE: You can donate to the family’s GoFundMe account here.
The Kelley family said Michael’s brain sits too low in his skull and extends down onto his spinal cord, which results in seizures and other complications.
The mother of the 5-year-old, Sherry, said Michael started acting unusual in June.
“It went from bad headaches to having pretty good nose bleeds. Those nose bleeds had some really high blood pressure,” Sherry said.
A week before Thanksgiving, Michael suffered his first seizure.
Kelley said it was 12 minutes full of fear and uncertainty.
EDITOR’S NOTE: You can donate to the family’s GoFundMe account here.
“When he has one, he doesn’t remember what’s going on during the fact. Afterwards, he’s just super anxious and scared,” said Sherry.
The Kelley family said after doctor visits and MRI scans, Michael was diagnosed with epilepsy as well as Chairi Malformation.
The diagnosis was the last thing Sherry wanted to hear.
“I couldn’t find words, I was scared. I don’t think anyone wants to hear their little one has something that can’t be fixed, immediately anyway,” the mother said.
Michael’s father, Chris, said because of Michael’s autism, it makes him leery of the doctor’s office and needles.
“He tries to tell us it doesn’t hurt now because he doesn’t want to go back to the hospital. Last night we said, ‘Michael does your head hurt? No,’” said Kelley.
The family said from seizure medicine and repeat imaging every three months, Michael isn’t the only one who fears the doctor’s office.
“I’m scared to get this last hospital stay, let’s just put that mildly. I know each of the MRIs are tens and tens of thousands of dollars. The last one was about 28-grand. Insurance only pays a small percentage,” said Kelley.
The Kelleys said the uncertainty of Michael’s journey is hard enough to process, so their philosophy is to enjoy the moment.
“We’re struggling as you know. We don’t know how long we’re going to be battling this. We don’t know what the future will hold and so we don’t want to think about it. We’re just one day at a time.”
The Kelley family said they’re monitoring Michael’s symptoms and the pocket of fluid on his spine.
We’re told if it worsens over time, then he’ll need surgery to alleviate that pressure.
EDITOR’S NOTE: You can donate to the family’s GoFundMe account here.
