Dreams come true for KP teen living with cystic fibrosis

Scott Turner, KP News

osh Loux, 17, was granted a wish by the Make-A-Wish Foundation. Instead of a location or meeting a celebrity, the Wanua-area teen chose to receive a special gift –– a Gibson, Les Paul guitar. Loux has cystic fibrosis, a rare disease, and will be walking in the annual Great Strides Walk in Gig Harbor, May 3. Photo by Scott Turner, KP News

Sometimes dreams really do come true.

Josh Loux, 17, was diagnosed with cystic fibrosis (CF) when he was just three months old.

CF is a relatively rare disease that, basically, causes thick mucus to build up in the lungs and pancreas, which leads to life-threatening lung infections and digestive problems.

Currently, there’s no cure for CF and, because it’s so rare, not as much money is thrown toward research as with, say, cancer and other high-visibility diseases.

Similarly, organizations such as the well-known Make-A-Wish Foundation have given more attention to children with cancer (about 55 percent, with 45 percent going towards other illnesses and medical conditions).

But that’s changing.

Earlier this year, Josh’s family received a phone call from the Make-A-Wish Foundation’s Seattle office that, after having been denied a few years ago, his wish was being granted.

Josh’s mom, Deedee Loux, remembers what a shock it was when she and her husband learned that their new baby, the second of their three children, had CF.

“It’s a genetic disease where both parents have to be a carrier and there’s no family history on either side of our family,” she said. “We have an older son, Christopher, 19 and he’s fine. And our daughter Aleisha, 14, is also OK.”

It took awhile, but once the doctors got him on the right mix of medications, nutrition and physical therapy, Josh has been able to live a pretty normal life.

“He was growing and thriving and doing well,” Loux said. “We had one little hiccup –– a near drowning –– where we almost lost him when he was 2, but I feel like the Lord spared him and has great things in mind for him.”

Josh grew up using a vest machine every day to tap the fluid from his lungs, did physical therapy and was careful with his diet. There have been “a lot of doctor appointments and just keeping a close watch on his health,” but other than that life was fairly normal, his mother said.

“Most of my friends didn’t even know I have CF,” Josh Loux said. “It was different, but not that different. I knew I was sick because I grew up with it and I never knew anything else.

“I could run and play and I was one of the kids that got picked first for a dodgeball game,” he said.

Then about four years ago, a micobacteria colonized in his lungs. “It’s really tough to cure and it doesn’t go away,” his mom said. “He’s had cocktails of antibiotics sometimes four-to-six months at a time and he had to have a port put into an artery so we could treat him that way.”

He went from “about 106 percent lung capacity” before the infection to about 43 percent, he said. Now, there are some things he just can’t do. “I can’t even go a mile without coughing and having issues. I try to live life as normal as I can, but I take naps like a little kid because I’m just really tired,” he said.

The bacteria is nasty enough that Josh has to go into the hospital a couple of times a year and he goes to a specialist to get certain types of antibiotics that come from the FDA, he said.

Recently, however, Josh started working out with his friend Mac Davis. “He’s been training with me and working with me. We do some running and we do weights,” Josh said.

He said he put on about four pounds since we started, which made his doctors really happy. And it’s also helping him use the air he breathes in more efficiently.

The Loux family also participates together in Gig Harbor’s annual Great Strides Walk for Cystic Fibrosis. Their team is called “Josh on the Go.”

According to Heather Paulson, the local Great Strides Walk chair, this year’s three-mile walk takes place on May 3 on the Cushman Trail. Paulson, whose 10-year-old daughter Lily Grace was born with CF, has chaired the event for the past five years.

“The event is always a lot of fun,” Paulson said. “There’s a handful of families in the harbor that have worked together over the years raising money and helping and supporting each other.

“And out on the Key Peninsula there are families raising money for Josh. The only thing stopping us from finding the cure is money. We need more awareness and more help,” she added.

The Loux family has lived on the Key Peninsula for four generations. “My grandparents lived here, my parents and I all grew up here,” Deedee Loux said. “It’s such a great community. When something bad happens, everybody rallies around.”

Which brings us back to the Make-A-Wish Foundation and Josh’s dream.

Since it began in in 1986, the Alaska-Washington chapter of MAW has granted the wishes of more than 5400 youngsters who have life-threatening illnesses, said Jeannette Tarcha, the chapter’s director of communications.

But until very recently, kids with Cystic Fibrosis were seldom included in the wish-granting.

When Josh was first nominated three years ago, he was having a tough time with the micobacteria, and when he learned that he had been “flat-out denied,” he was pretty angry.

“That hurt me a lot and I was like ‘Why do the cancer kids get everything?’”

According to Tarcha, at that moment in time, his medical care team did not deem his condition as life-threatening. “Make-A-Wish has a history of granting wishes to children with CF who at the time of referral were deemed by their healthcare team life-threatened because of a host of other complications,” he said.

“I was angry for the many kids who have CF who are younger than me and have a worse situation. It would be a really hard thing to deal with when you’re 4 or 5,” he said.

But “as of Feb. 1, Make-A-Wish now grants wishes to all CF children,” Tarcha said.

“We’re starting with the oldest kids first –– the ones who are getting close to 18 –– and Josh is one of our first CF recipients,” she added.

Josh has played the guitar for a dozen years and his wish was for a certain very special guitar. And he got exactly what he was dreaming about, plus a day in Seattle with friends at the Experience Music Project and a nice lunch.

“I was like –– ‘Are you serious?’” he said. “The first time I played it, it was like flawless. I’ve never played a guitar like it.”

And another of his wishes was also granted. “To have Make-A-Wish do this for me shows me that they will also do it for the younger kids who are CF patients. And that makes me really, really happy,” he added with a big grin.

For information about Make-A-Wish, visit akwa.wish.org.