Crimson Tide football players help two Alabama toddlers facing life-threatening disorder
Updated October 7, 2016 at 2:50 PM; Posted September 9, 2016 at 11:17 AM
Kruz Davenport, 3, meets a Crimson Tide football player as he and his family work to spread awareness of his life-threatening genetic disorder, a rare form of dwarfism. (Submitted)
Kruz Davenport is a tiny 3-year-old with some big friends.
He calls them his "football friends" and met them a few weeks ago when he and his parents, Kyle and Jessica Davenport, traveled to Tuscaloosa to meet University of Alabama football coach Nick Saban and members of the Crimson Tide football team.
Kruz got to sit at Coach Saban's desk and play with Saban's glasses. He visited the workout room, where he craned his neck upward to see the huge football players as he handed them bottles of Gatorade and t-shirts emblazoned with the words "1-in-3 million."
Kruz is that 1-in-3 million. So is his sister.
They are only the fifth and sixth documented cases in the United States of an incredibly rare form of dwarfism called Schimke immune-osseous dysplasia (Schimke). It's a genetic disorder that causes short stature, kidney disease and a weakened immune system.
It also carries a life expectancy of nine to 11 years.
"To us, that's just what the paper says," said Jessica Davenport. "They're a miracle to even be here, and it's a miracle we found out so early."
There is a drug that might help prolong the lives of Kruz and Paizlee and kids like them. But unlike with more common conditions like cancer or heart disease, there's no army of fundraising warriors lining up to get research and drug testing funded.
As far as the Davenports know, there's only one other family in the country raising money for Schimke. Hence their trip to Tuscaloosa, the t-shirts and an ambitious schedule of fundraising events.
What do you do when your children have a disorder so rare that nobody's raising funds to research the drug that could save their lives?
Kyle and Jessica Davenport are prepared to fight.
A dramatic entrance
The Davenports live in Muscle Shoals. When they found out they were pregnant with Kruz, they talked and dreamed about the kind of person he'd be. Kyle and Jessica are athletic - Jessica was voted "most athletic" at Muscle Shoals High School and Kyle was "Mr. CCHS" at Colbert County High School - so they always imagined their little boy would love sports and fitness as much as they did.
But Kruz Davenport made his dramatic entrance into the world a month early. He was 3 lbs. 6 oz and was not breathing. He flatlined, said Jessica, before doctors and nurses were able to revive him. He spent a month in the Neonatal Intensive Care Unit at Huntsville Hospital.
As he grew he seemed healthy, if a little on the small side. But around his first birthday, his parents started noticing his sensitivity to light.
"Over the next two years we saw 10 specialists in Birmingham," said Jessica. "They always found something else that made them send him somewhere else." From the ophthalmologist to the neurologist, to genetics testing, to a growth specialist. Kruz eventually ended up at a Birmingham nephrologist in May 2016, where they learned he had only one kidney and it wasn't functioning properly.
After some research, the nephrologist recommended several tests. One was for Schimke's.
There was a 1-in-3 million chance both Kyle and Jessica were carrying the gene mutation that causes Schimke's. And if they were, there was only a 25 percent chance they'd have a child with Schimke's.
Kruz beat those odds. So did Paizlee.
Some kind of normal
In many ways, Kruz, 3, and Paizlee, 18 months, act like normal toddlers. They love to swim in the pool, and love animals - especially their two dogs and new cat. The zoo and the pet store are some of their favorite places.
Because of their compromised immune systems, however, as cold and flu season approaches they mainly stay at home.
"They can't go to a normal birthday party, or a normal Sunday School class, but we try to do things as they can do them," said Jessica.
Kruz is about the same size as his little sister and does have some limitations. He has high blood pressure, and has to eat low-sodium foods - which is challenging, because he loves chicken nuggets and macaroni and cheese.
Now 18 months, Paizlee has not yet shown any signs of the disorder. She may be one of the youngest kids ever diagnosed, said Jessica.
"Where Kruz likes to lay around a lot, Paizlee is like Tarzan," said Jessica. "She's just a normal, wild kid. We never suspected she could have it."
A genetic test confirmed she did. Doctors told the Davenports they may have the only sibling set of Schimke ever documented.
It's been an overwhelming couple of months, as Paizlee's diagnosis came right on the heels of Kruz's.
"There are a lot of times you want to shut the world off and don't even want to talk about it," said Jessica. "But the way I look at it, they don't deserve that."
She said Kruz in particular can tell when she's feeling low, and will come up to her to ask why she's crying.
"We're big believers and our faith is first before anything," said Jessica. "They deserve for Kyle and me to be happy and positive and to try to make life as normal as possible."
Since his visit to Tuscaloosa, any time Kruz sees football on the television he shouts, "my football friends!"
Some of his football friends - including Crimson Tide players like O.J. Howard, Tony Brown and Robert Foster - have participated in a social media challenge called #StrongLikeKruz. The challenge was created to raise awareness of Kruz and Paizlee's condition. Organizations like the Muscle Shoals Fire Department have participated, photographing themselves doing pushups and sharing it on social media.
The Davenports hope the #StrongLikeKruz challenge will take off on social media and help raise awareness for Schimke like the ice bucket challenge did for ALS.
Kids with Schimke typically don't die from Schimke itself, but from conditions it causes, such as kidney failure, or from infections that their weakened immune systems can't fight.
Researchers have found that a drug called Ataluren could bypass the gene mutation that causes life-threatening conditions like kidney failure or stroke in kids with Schimke.
But they'll need around $100,000 to fund the first stage of research and will eventually need $3 million to bring it to clinical trial, said Jessica.
"For me, my goal is to raise $3 million," she said.
They've raised nearly $17,000 so far, keeping it in the Kruz and Paizlee Davenport Fund at First Metro Bank in Muscle Shoals. Once they reach $100,000, Jessica said, it will be turned over to the Little Giants Foundation, which works to fund Schimke's research.
"Everybody in the whole community has pulled together," she said. "I can't even believe it. I check my inbox sometimes and there are 200 messages from people, and I'm just so thankful for them."
She hopes to have raised $100,000 by the end of October thanks to a country music event to be held in Kruz and Paizlee's honor.
Country music artist Darryl Worley will perform Oct. 29 in a special "Rock'n for a Kure" fundraising concert at the Alabama Music Hall of Fame. Other artists will also perform, and the event will include food, games, a raffle, a costume contest, inflatables and more. Information is available by emailing firstname.lastname@example.org. Tickets are $10 and available at First Metro Bank and Nellie Mae in Muscle Shoals.
The Davenports are also organizing a Gathering for Little Giants glow run and outdoor concert at Wilson Park in Florence on Oct. 8.
Jessica said her family doesn't need help with medical bills at the moment; right now their focus is on funding the drug research.
"When bad things happen, you can fight or just lay down and be done," she said. "I've always fought. So when this trial came, it was like, 'What are we going to do?' These are our kids. They're our biggest pride and joy in life. We're going to fight for them."