Special day held for Gardens boy battling rare genetic disorder - Fox29 WFLX TV, West Palm Beach, FL-news & weather

Special day held for Gardens boy battling rare genetic disorder

PORT ST. LUCIE, FL (WFLX) - A Palm Beach Gardens boy is fighting for his life, so to forget about the struggle, even for one day, means a lot.

That's what Jordon Ruelle-Lees got to do Saturday, thanks to one Treasure Coast organization.

Ruelle-Lees is a star golfer at Port St. Lucie's PGA Village. Saturday was all about him because his days are likely quite limited. Doctors don't have a name for Jordon's genetic disorder; it's just too rare. He was born without cilia, the tiny hairs in the body that filter germs.

"[Jordon is] one out of six people that they know of in the world that has no cilia, but he's the only living one," said Jordon's mom, Raina Ruelle. "And they've all died before or by the age of 10."

"We've fought this far, and we're going to do what we can to prove them wrong again. Right dude?" Raina asked Jordon. He responded with an, "Mmhmm."

Jordon's eighth birthday is Tuesday, a fact that did not go unnoticed by the Van Duzer Foundation and the folks at PGA Village, who facilitated Jordon's dream day. A birthday balloon tied to the boy's golf cart blew in the breeze, and he enjoyed a birthday cake with his family and friends.  

Jordon has undergone more than a dozen surgeries and once spent more than 50 days straight holed up in a tiny hospital room. It's taken a toll and forged a bond between mother and son. "He's the air that I breathe," said Raina, through tears.  

Jordon wiped away his mom's tears, gave her a hug and grabbed a tissue for her.

At the golf course, all the pain and heartache of Jordon's disorder melted away. He was allowed be a seven year old who didn't need a doctor's approval to go outside. "The last hole? I liked that one," said an animated Jordon. "I hit it hard, and it flew there. And it flew right there!"

Jordon was truly the star of the show, as an entourage followed him from tee to tee, cheering and encouraging, instructing and clapping. The Van Duzers of the Van Duzer Foundation and Jordon's parents constituted the fan club. "Everybody thinks I'm very cute. Do you?" he asked.

And it wasn't seeing the huge silver trophy Rory McIlroy held last week or eating lunch with PGA senior director Bob Baldassari that meant the most to Jordon.

"Jordan [Van Duzer], he helped me drive. Now, that was the coolest part. Now that was fun," said Jordon.  

Jordon sat on Jordan's lap as the two navigated in a golf cart from hole to hole. "Yeah, this is the best days of my life. The most fun I ever had," Jordon concluded.

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