DALLAS — Jordan Boren's dream – as he sits five hours a day, three days a week connected to a dialysis machine at Children's Health in Dallas – is that someone will find a cure for the cystinosis that has plagued him since birth.
Until that dream can come true, the 13-year-old boy is at least getting a chance to have one of his other wishes take flight.
Cystinosis is a rare metabolic disease where amino acid cystine gets into the cells but has no way out, crystallizing and causing early cell death. Cystinosis affects only an estimated 500 children and young adults in the United States, and 2,000 worldwide. The disease slowly destroys the organs in the body, including the kidneys, liver, eyes, muscles and the brain.
"He was nine months old and we ended up spending up to his second birthday in the hospital," said Cycilia Boren, Jordan's mother, of the initial diagnosis.
"He has just been battling this since he was born and everything that comes along with it."
Jordan received a kidney transplant from his mom in 2014. But after three years, his body rejected the transplant. Now until another donor can be found for a second transplant attempt, they travel at least three days a week from their home in Wills Point to Children's Health in Dallas for dialysis treatments.
"Is it a daily battle? Of course," his mom said. "But he's still here with me and he's here telling his story and advocating what he's been through."
"I'm always tired after dialysis because it makes it hard on me," Jordan said. But he also wanted to tell us about another part of his long hospital stays.
Jordan, is mostly homebound since his condition leaves him too fragile to attend school. The cystinosis also affects the light sensitivity of his eyes. So, at home, he loves robots, technology, and especially drones. He loves them so much he even got in trouble once for flying a drone in a hospital hallway.
"Because you're not allowed to fly drones," he said.
"I don't know why; it's such a big place," he joked.
"He had a very lenient nurse," his mom said. "So they would fly drones throughout the hospital late at night. That was his thing. He couldn't go out of the room. And he wanted to see what was going on outside, he wanted to know. He taught himself how to fly these things and make it to where he could see outside his window."
"Yeah and they caught me and said put it back," Jordan said.
So, on Saturday, there was one very big surprise waiting for him at his 13th birthday party.
Thanks to the Las Vegas-based organization Miracle Flights, which flies sick children for free to and from medical appointments and procedures.
In Jordan's case, through a grant funded by Horizon Therapeutics, he and his mom are flying Friday to Las Vegas so that he can be the guest of honor at the Carnival in the Clouds Drone Festival on Saturday.
The event, sponsored by Miracle Flights, features professional drone experts performing aerial acrobatics, entertainment, and a chance for Jordan to do some flying of his own.
"His reaction was just priceless," his mom said of the birthday surprise. "It's something that I will always have that memory, to make him happy. He deserves to make memories. Something that he enjoys to do."
"I hope I get to fly one of those drones," Jordan said.
And when he comes home, Jordan will focus on his biggest hope, that someone could find a cure for his rare disease. And that a successful kidney transplant might let him say goodbye to all his medicines and his time in that dialysis chair.
"And feel like an actual kid, not always having to go to the hospital," he said.
A dream he hopes will soon get to take flight too.