Treatment holds hope for family
JOPLIN, MO. ? Hailey Johnson has quite a bit in common with other 5-year-olds. She loves to laugh; she has an on-again-off-again love of her siblings; and she wants nothing more complicated out of life than to cavort with her friends.
Well, maybe a walk-on role on Sesame Street would be nice, too. There’s just one thing distancing little Hailey from her dreams of a normal life – she has cerebral palsy.
“When she was a day old, her heart stopped beating,” her mother, Angie Johnson, explained. “When your heart stops beating, you lose oxygen and your brain cells become damaged and start dying. That’s what Cerebral Palsy is, the brain damage brought on by lack of oxygen.”
One of a set of triplets, which include brother Devon and sister Dillon, Hailey is unable to walk, stand or use her arms or legs. According to her mother, she also lacks self-help skills, such as the ability to feed or dress herself.
She hopes to improve Hailey’s condition with the addition of Joplin’s first hyperbaric chamber, something the Johnson family has been working on for the past three years. They got the idea for a local chamber after their daughter showed marked improvement with one she visited in Kansas City.
“We thought that if lack of oxygen caused this, maybe more oxygen can help fix it, even though it won’t cure it. When you have a brain injury, there isn’t a lot of hope. There just isn’t a lot out there to help it, just the symptoms, but nothing for the brain itself.”
Within two months, the Johnsons were delighted to find that Hailey was doing things she could never do before. She became more alert, paid attention when people talked and just generally “woke up.”
That was enough to convince Angie and her husband, Andy, a Tamko engineer, that there was indeed hope for Hailey. There were obstacles to overcome, however. First, the trips to the hyperbaric chamber in Kansas City were grueling for everyone involved.
Secondly, insurance wouldn’t cover the cost of the chamber treatments, which are considered medically beneficial for burn victims, but experimental for cerebral palsy patients. In no time, the bills began to add up. The family soon realized that if they were going to continue Hailey’s treatments, they would have to drum up a hyperbaric chamber for Joplin.
They knew it was one of few options for their daughter that didn’t involve invasive procedures such as surgery. That determination blossomed into the Hope for Hailey Foundation. They successfully raised $16,000 to buy the equipment (with a sizable discount) and even purchased a trailer to house it.
Once the chamber is fully operational, which Johnson said she hoped would happen within a year, it will be used by Hailey on a regular basis, then eventually relocated for use by others as well. They already have a technician on board to help administer the treatments but are still working on storage and handling of the liquid oxygen that will be funneled into the chamber.
Johnson said they lacked one of the most vital components of running the chamber on a full-time basis as well – a doctor willing to learn how to prescribe and administer the procedure, as well as take over the full-time operation of the chamber.
It will take a “qualified, dedicated medical professional” willing to learn the details that Johnson rattles off as quickly as her children’s names and ages.
“We normally only breathe about 20 percent of oxygen, but the hyperbaric chamber is 100 percent oxygen. Also, it saturates your blood stream with it, which promotes faster healing. The younger a child is when treatments start,” said Johnson, “the greater the benefits because the influx of pure oxygen can generate new cell growth and help repair injured cells.”
It hasn’t caused a complete reversal of Hailey’s cerebral palsy, but Johnson said she was nothing if not patient.
“Every month that goes by with the chamber unused is time wasted,” Johnson said. “It hurts to be excited about something and not have the medical community be excited too. The flip side is how wonderful people have been who want to help us. About 90 percent of them have never even met us, but they reach down and give anyway. To know that total strangers care that much for Hailey is a blessing.”