Chasing Hope: Family of 6-year-old Md. boy looks for help as he battles repeated seizures
WASHINGTON (ABC7) —
“This is the best Christmas ever," screams a 4-year-old Cameron Longley as he dances wildly near his Christmas tree in a grainy cell phone video taken by his parents.
That video, taken a couple years ago, is among the many kept by his mother Zarinah Cuffee, step-father Roland Cuffee and father Shaun Longley. They are images of how things used to be: memories, powerful and sacred for this family of a boy growing up and living as he should, with abandon.
“Just so active and not a care in the world and when this happened it was just tough," says his father Shaun Longley.
Wherever life took Cameron there were two things leading the way: his broad smile and kinetic energy. But in March of 2016 Cameron's health mysteriously unraveled.
"They say with viruses it can last 10 days with a child,” says his mother Zarinah Cuffee.
What started out as a low-grade fever turned into continuous seizures. Doctors placed Cameron in a coma to save his life and figure out what was so wrong.
"Cameron is strong willed. It's unbelievable. From seeing him in the ICU, his fight. He's going to fight for what he wants to do and he fought to live,” says Longley.
Months later Cameron emerged from that coma with a diagnosis: febrile infection-related epilepsy syndrome, commonly referred to as FIRES. This one-in-a-million condition hits healthy children without warning. It causes haphazard seizures that degrade cognition and behavior.
From the outside it may look like Cameron, now 6 years old, has made a remarkable recovery. His parents are, in fact, profoundly grateful that he has made so much progress since his diagnosis. But as time wears on harsh realities have surfaced.
His mother says, "He's come so far but he still has seizures on a regular basis and we don't know what the triggers are.”
On the very day we caught up with the family at a park near their home in Maryland, Cam had a seizure.
It lasted a few minutes. And then, just like that, he was back. But soon after he awoke he became disoriented, agitated and had a hard time standing up. And the cruelest of facts about his condition: a cause and a cure remain elusive for FIRES.
"You think you get used to it but you don't ever really do you can just handle it a little bit. You cry a little less. You don't get as sad. It's hard just to watch him go through that,” says Cam’s step-father Roland Cuffee.
To make matters worse, Cameron can't tell them what's wrong. His parents tell us he’s now non-verbal with the behavioral traits of a two-year-old.
"I don't think he is always aware of what could be harmful to him,” says his father.
His parents say they have to keep a watchful eye on their son. Doctors recently diagnosed Cameron with autism.
"You start to forget how it used to be and this becomes what life is and I don't want it to be. I want him to have a normal life. I want him to go back to talking and telling jokes and being silly, " says his mother.
For this family the hope is that the life that used to be remains within reach.
Cuffee says, "And then I started researching it more and I said wait this may be a viable thing for Cameron."
She is referring to Hyperbaric Oxygen Therapy, also known as HBOT. It's where a patient breathes pure oxygen from inside a pressurized chamber. It's well-established in treating decompression sickness, carbon monoxide poisoning and wounds that won't heal.
But this family will tell you mainstream doctors they've talked with are skeptical that HBOT will work for Cameron.
Longley says, "When we've mentioned it to them they've just said well we haven't seen too many positive things with it."
They point to a little girl from Arkansas as reason for optimism. Eden Carlson nearly drowned after falling into a backyard pool. Her mother says months of HBOT pulled Eden out of a vegetative state and that her daughter's cognitive abilities and speech are back to normal.
Cameron’s parents hope this treatment gives their son a chance at living a better life. But there's a catch. Insurance won't cover Hyperbaric Oxygen Therapy. The treatments could last months and would force the family to relocate near the medical facility in Louisiana.
Cuffee says, "I'm hoping and I'm praying that if this works this gives other children hope and opens a whole new door to treatment for children that seem untreatable."
“But he's going to get the procedure. There's no doubt about that. However that's going to happen he's going to get it,” says Longley.
UPDATE: The latest update is that while the family has not reached their fundraising goal they are moving forward with treatments for Cameron down in New Orleans which are set to begin October 30th.