Alabama boy with rare disease will get 'superpowers' during upcoming surgery
As he nears his fifth birthday on July 16 - the third consecutive one to have a dinosaur theme - Kruz Davenport has no idea that he has an extremely rare and fatal disorder with a life expectancy of nine to 11 years.
His mother, Jessica Davenport, who has fought tirelessly to raise money and awareness since he was diagnosed two years ago, passes out business cards to anyone who has questions about his stature, his symptoms or anything else. The cards explain that he and his sister, Paizlee, 3-1/2, are the first known sibling pair diagnosed with Schimke immuno-osseous dysplasia, or SIOD. Giving strangers basic information about her children's disease is one of the many ways she protects them both from learning what they're up against.
What Kruz does know is that he and his family - his mom; his father, Kyle, a toolmaker/machinist; and his 17-months-younger sister, Paizlee - are leaving their home in Muscle Shoals later this month for an extended trip to California. While there, Kruz is going to receive some of his dad's superpowers.
After all, superheroes use their superpowers to save lives. And that's exactly what Kyle will do for his son when he donates bone marrow and a kidney to him: help Kruz get stronger and live a longer, better life.
When his parents tell him he's going to get his daddy's superpowers, Kruz points to his port and feeding tube, which he'll no longer need after he undergoes a kidney transplant. He's excited about the prospect of experiencing two things universally loved by children his age: going swimming and eating macaroni and cheese.
Both parents are optimistic that SIOD isn't a life sentence for Kruz and Paizlee. Through the Kruzn for a Kure Foundation, they're funding research on the West Coast at Stanford University School of Medicine, where Dr. David Lewis, a professor of pediatrics (immunology) at the Lucile Salter Packard Children's Hospital, is working with his staff in the Lewis Lab to find a cure for the Davenport children and others.
Every month, in addition to her regular mom duties plus the specialized medical care her children require, Jessica sends $30,000 to Stanford through the foundation she and her husband started. She does it with a heart full of hope and gratitude.
"We've been blessed with a great community," she says of Kruz and Paizlee's many supporters.
The foundation is on track to hit the $1 million this year.
"I can't explain it," she says, "except look at how God works."
'I have to know'
Kruz's entrance in the world was "traumatic," Jessica says. Born premature, he weighed just 3 pounds 6 ounces. After they brought him home, she and Kyle noticed their baby was extremely sensitive to light, and he quickly fell behind on the pediatrician's growth chart.
During his first two years, the Davenports took Kruz to see 10 different specialists in their search for answers. "No one knew" what was wrong with him, Jessica says, "and I'm the type who isn't satisfied with that. I have to know."
Kruz was diagnosed with SIOD on June 30, 2016, just before his third birthday. His younger sister, Paizlee, was diagnosed in August. Jessica and Kyle learned that they are both carriers of a mutant genetic marker. They had a one-in-30-million chance of both being carriers of the gene, they were told. There was a one-in-80 million chance for siblings to receive both genes from their parents. They are the only known case of siblings with SIOD in the United States, where they are the fifth and sixth cases.
SIOD is a rare form of dwarfism that causes a compromised immune system, kidney failure, skeletal dysplasia, back pain, migraines, risk of strokes and seizures and more. Worst of all, the life expectancy is nine to 11 years.
Even the rare disease organizations didn't have SIOD in their databases, Jessica says. But she did find Dr. Lewis at Stanford, who "was willing to take on research with us." He would need $200,000 to get started, and an additional $30,000 per month to cover salaries and supplies.
With both children's lives depending on a research lab in California, Jessica determined that she would raise the money somehow. She and Kyle sought expert help in organizing the Kruzn for a Kure Foundation shortly after Kruz's diagnosis. They started by selling bracelets for $5 each. Now the foundation holds frequent fundraisers, including bake sales, yard sales and birthday celebrations, as well as T-shirts, hats and Popsockets for smartphones.
Thanks to regular monthly contributions ranging from $5 to $1,500, the foundation has half of what it needs to pay Stanford each month, and fundraisers make up the remaining half of the $30,000, Jessica explains. Recently, when the amount of work required to maintain social media and hold fundraisers got to be too much for her to do alone, the foundation hired Tori King as marketing director - "a massive blessing, especially for me," Jessica says.
A 10-member board of directors ensures that every dollar raised goes toward research for SIOD. "Kyle and I are the decision-makers for their medical care, but not for the foundation," Jessica says. "That's what we love about it."
Biggest challenge yet
Kruz and Paizlee are happy kids who keep their parents busy and laughing. Kruz, is "very sweet, heartfelt, gentle and loving," his mom says, and is the size of an average 18-month-old. She can still carry him on her hip, but he's not a baby anymore. He's attentive, a good listener and has an eye for detail. He loves playing with dinosaurs.
Even though she's the younger sibling, Paizlee is two inches taller than her brother and is the height of a 2-year-old. "She's a ray of sunshine," Jessica says of the free-spirited little girl who is into mermaids. "She has a lot of energy and is hilarious."
The two of them are often mistaken for twins, and that's when Jessica will hand out those business cards that tell curious people about SIOD and how they can help. "We have to be careful what we say around them," she says. "They know their life is a little different than others'."
She posts videos of her children on the foundation's Facebook page and on a new YouTube channel to help raise money and spread the word about SIOD.
"Along the way, we realized people love watching Kruz and Paizlee," Jessica says. "People feel very involved in the story because we've let them in. Sometimes I don't even want to talk and share, but I have to keep everyone updated on our story."
Through the videos, supporters have seen "the good, the bad and the ugly," as Jessica calls it. Recently, she shared behind-the-scenes footage of a fun photo shoot in her living room. At the end, Jessica gets emotional as she muses that photographs become more meaningful when your children face a rare, fatal disease.
In another video, a family friend and donor to the foundation, David Yarber, talks about Jessica, who he has known since she was a baby. He reveals that her own mother died in a car accident when she was young. And then, to have two children diagnosed with SIOD just seems like too much sadness for a young woman to bear.
"This girl is probably one of the most driven human beings I have ever seen in my life," Yarber says. "Of course, she has the greatest incentive of anyone or anything. When you're fighting for your children's lives, nothing is insurmountable."
A year ago, Kruz's kidney failed - he only has one - and he has been on dialysis ever since. In another recent video, Jessica showed the process of administering daily medication to her children. For Paizlee, it's a matter of handing her the medicine and letting her squirt it into her own mouth. For Kruz, the process is more complicated and given through his feeding tube. His mom has to give him a dreaded weekly shot, as well.
During their visit to California, Kruz will undergo a new stem cell treatment that's part of a clinical trial. For the past year, it has been assumed that he would receive bone marrow from his dad, Kyle, because they have the same blood type. But in a Facebook Live post on Monday night, an excited Jessica reported that Dr. Lewis had called to say she and Kruz are an 80 percent match for bone marrow. If Kyle matches with Paizlee, who will need the same procedure later, then Jessica will give Kruz her "superpowers."
Following the bone marrow transplant, she plans to donate her kidney to Kruz as well. The family plans to be in California for up to six months.
"It's been a long time coming," says Jessica. "We haven't wanted to rush it but knew it had to be done." Kruz is feeling well now, and his labs look good, she says.
The family will celebrate Kruz's birthday in Alabama before they head to California, where Ronald McDonald House will become their home. An online birthday fundraiser is well on its way to $50,000 for the foundation. On July 15, another fundraiser will feature a lantern release birthday bash at Isbell's Pumpkin Farm in Leighton, Ala. For $10 each, supporters can buy a lantern filled with a message of hope for the family as they undergo their biggest challenge yet.
'Have faith and jump'
Jessica never misses an opportunity to raise awareness and funds for her children's condition. She even jumped out of an airplane at 14,000 feet. In a video documenting her tandem skydiving experience, she says you just have to "have faith and jump" - which is exactly what the former dental hygienist did when she first learned that her children had a fatal illness.
The Stanford researcher who is working diligently to find a cure for the Davenport children, and others in the future who are born with SIOD, is among those impressed with Jessica's determination. They talk on the phone every week, and she has met with him twice at his lab.
During her second visit to Stanford, Jessica videotaped a short interview with him. As Paizlee climbed on him - "They love him," Jessica explains - Dr. Lewis patiently provided an update on his progress researching T-cells.
"The Davenports' generosity and their foundation has really been one of the most remarkable things I've ever seen - really unprecedented," he says. "So we're really excited to be involved with the project. ... So many advances happen every day. I'm very optimistic we'll learn a lot more about the disease in the next six months."
Jessica doesn't like to look too far into the future, she says. "It's easier to take it day by day."
When she starts to feel frustrated, when she allows herself to think of the clock ticking down as the months go by, Jessica remembers that "in the science and research world, miracles happen every day. That's why she is so motivated to raise more money, because the more money she can raise, the sooner a cure might be found.
For now, Jessica is focusing on Kruz and his upcoming bone marrow and kidney transplants.
"I have my breakdowns," she says, "but I get it out and move on. I just don't stay there. I've got to get back and fight hard for Kruz and Paizlee. Obviously, as a parent, we worry about a sniffle, much less a clinical trial. That's where faith steps in, but fear is a real thing. I've got to be strong for Kruz and Paizlee because they depend on you and everything you're doing. Their life depends on it."
Kyle often reminds her that "what God wants is to touch as many people as possible with our story." She wants to bring hope to others facing "overwhelming obstacles," she says. And she believes that the study of SIOD might one day fill in missing pieces in cancer and stroke research.
"This is probably the furthest from what I thought my life would looks like," she says, "but I finally feel like I have a purpose. This is it. I know my purpose here on this earth is to help all SIOD children and families. We're not going to stop."