Jessica Davenport: God knew what I needed
By Monica Collier Staff Writer
May 14, 2017
Editor’s note: At the time of print Thursday evening, Kruz Davenport was in stable condition and improving at Children’s of Alabama. Go to the family’s Facebook page, Kruz’n for a Kure Foundation, for updates.
Kyle Davenport and his son, Kruz, are in a hospital room at Children’s of Alabama.
The two sit in a window seat with a spectacular ninth-floor view of Birmingham as their backdrop. Kruz is playing an ABC game on a tablet as they wait for the rest of their family to arrive.
Hospitals have become a familiar setting for the Davenports. Kruz, 3, and his sister Paizlee, 2, have Schimke immune-osseous dysplasia, SIOD or Schimke, a rare form of dwarfism. There are only 7 known cases in the United States — Kruz and Paizlee are the only siblings with the disease.
SIOD puts Kruz and Paizlee at risk for kidney failure, stroke and heart failure. Their weakened immune systems make any virus or infection extremely dangerous.
Kruz was diagnosed first — this past summer — with Paizlee’s diagnosis coming several months later. There was a one in 3 million chance that both parents — Kyle and Jessica Davenport — were carriers of the gene causing SIOD. There was only a 25 percent chance that both the Davenports' children would be born with SIOD.
A mother’s love
“Jessica is a great mother,” Kyle said. “She had this instinct. Even before we knew (about the disease), she just knew. She never quit searching, and I’m glad she didn’t.”
In the beginning, Kyle questioned why this was happening to his children. He said he still experiences moments of disbelief, but he shakes it off because there’s no time for that.
“I was mad,” he said. “But I stopped being mad. Our main goal every day is to make sure they’re happy. We fight real hard for everything else. Jessica is so good at keeping the kids active — they go places and do things.”
It’s Kyle’s faith in God and the strength of his wife — the mother of his children — that keeps him grounded.
“I say I help, but what I do is take care of babies,” he said. “Jessica has them all day so when I get home from work, I take care of them and she raises awareness. That’s what she does. She’s on the phone, she’s on the computer trying to make something happen. She’s more of an outspoken, people person than I am.”
A super woman
Kyle said what Jessica has done with raising awareness and raising money for research in such a short period of time amazes him. Their ultimate goal is to raise $6 million. They’re on track to raise their goal of $1.5 million for this year.
“I don’t know how she does it,” he said. “She’s an amazing woman. She’s super woman. When she sets her mind to something — anything, no matter what it is — she’s going to do it. If she thinks something needs to happen, she’s going to make it happen one way or another. I tell her all the time, ‘There’s no way anybody else could have done what you’ve done by yourself.' "
One night, the Davenports were watching the news, and they saw where someone had climbed Trump Tower to raise money for a cause. Kyle said it has become a sort of running joke in their house because Jessica immediately said, “I’ll do that,” but the truth is, he knows his wife would climb the tallest tower to help their children.
During one of their trips to see doctors at Stanford in California, Jessica made Kyle try to knock on Mark Zuckerberg’s door. Zuckerberg is the co-founder of Facebook.
“His security guard caught me before I even got two steps out of the van,” Kyle said. “I made sure I was as open as possible because I knew when I got out of the car they were going to come. She wanted to do it herself, but I told her if one of us was going to jail, it had to be me because the babies need her. I didn’t get arrested, and the security guard did take the letter I was going to leave at Mark Zuckerberg’s door.”
Raising money for research is key to Kruz and Paizlee’s futures. The Davenports hope research will reveal a drug to prolong the toddlers’ lives or to find a cure for the disease. Since SIOD is so rare, the Davenports have found that there’s virtually no chance research will be funded unless they raise the money themselves.
“She’s determined to fund the research by herself if she has to,” Kyle said. “Without a doubt, there absolutely could not have been a better mother for my two kids. I’m not saying she’s perfect, but she was made for this, as sad as that is. Nobody should be made for this …”
Dinosaur in the room
Kruz’s rendition of “Old MacDonald Had a Farm” — complete with dinosaurs — is interrupted as Jessica comes into the room pulling Paizlee in a little red wagon. Kruz runs to his mother and she scoops him up in a loving embrace.
Jessica has been on the phone all morning coordinating doctors at Stanford with those at Children’s as the family faces an unexpected development with Kruz.
“We’re very blessed with Children’s and Stanford,” Jessica Davenport said. “They work together, and that helps take stress off me. As a mom, them working together is so important to me. With this disease, there is no peace of mind, but I think this is as best as it can be.”
Riding on faith
The Davenports are young adults with recent memories of wilder days. Both Kyle and Jessica are Christians and were raised in the church, but it was Kruz and Paizlee that brought them close to God.
“The good side of this is, you take who I was before compared to now — I’m a better person,” Kyle said. “What we did before and how we acted before — what we thought was important before — all of that has changed. When I come home from work, I don’t just watch TV and go to bed, I get in the floor and play with my kids.”
While pregnant with Kruz, Jessica felt fear knowing she was going to be responsible for another human being.
“I really got back into the word,” she said. “Kyle and I both did. I’m so thankful for Kyle. He’s my rock.”
Jessica doesn’t hesitate to say Kruz changed her life.
“I was on a path, and I needed Kruz,” she said. “He came into the world and completely changed my life in a 360-degree way.”
Kyle said he has peace in his heart because now, he trusts the Lord and looks for blessings in everything.
“I finally realized, it’s all going to be OK,” he said. “It doesn’t take away the sadness or the pain, but it gives me courage.”
When she prays, Jessica tells God, “You obviously think we can do this, so we will do this.” She prays to stay focused. She said when she gets down, she doesn’t stay down for long because her children need her.
“Kruz is so observant and so smart,” she said. “Paizlee is more independent and kind of spunky, but Kruz can feel my tension. He understands my emotions. I trust the Lord, and I don’t stay down. I want everyone else to be in this fight with me and my momentum sets the pace.”
A few weeks ago during a doctor’s appointment at Stanford, the staff praised Jessica for her fundraising success.
“They said it’s miraculous,” she said. “I told them that it’s the good Lord.”
Becoming a mother
Jessica lost her mother at a young age and was raised by her grandparents. She said she had always felt like she had a rough life, but when Kruz was born, she knew the obstacles she had overcome were all preparing her to be a mother.
“I share my testimony in churches sometimes,” she said. “God has prepared me my whole life for this moment, and I never realized it until now. He has given me obstacles to overcome to prepare for the big battle that’s going on right now.”
Because of the loss in her life, Jessica said her biggest fear has always been losing her children.
“I know that’s every parent’s fear,” she said. “But I had this overwhelming fear that kept me up at night. When we got this diagnosis, I finally gave my fears over to the good Lord, and I started fighting. That’s all I could do. We said from day one we’d take on the world for them, and sometimes I feel like that’s what we’re doing.”
Jessica said before becoming pregnant with Kruz, she had never been that person saying she couldn’t wait to be a mom.
“I just didn’t feel like it was in my cards,” she said. “Now, with Kruz and Paizlee, they were both my surprises. When I say they literally changed my life — God knew exactly what I needed. If you would have told me five years ago that this was going to happen, I would have told you you’re crazy.”
She said the first time she felt like God really showed up in her life was the day Kruz was born.
“I had a perfect pregnancy,” she said. “We had paid for a 4-D (ultrasound) imaging package. We went back five times because he wouldn’t show his face. On the fifth time, they noticed that his heart looked enlarged and the fluid was low.”
While being monitored, Kruz’s heart stopped and Jessica had an emergency C-section.
“That’s when my faith kicked in,” she said. “I remember praying to God to please let him make it. He did. He wasn’t breathing when he came out. They did CPR on him and brought him back. He was born at 3 pounds, 6 ounces. That’s how I became a mother.”
Love and support
Kyle and Jessica are overwhelmed by the love and support of the Shoals. Kyle said it humbles him, and he is especially touched by the love other children show Kruz and Paizlee.
“I’m a big softie when it comes to kids,” he said. “Watching kids say, ‘hey Kruz, hey Paizlee,’ and bringing them change and giving up birthday presents — it’s just amazing. Good, honest people wanting to help us by donating just $1 means the world to us. If we get $1 from 6 million people, we’ll be funded.”
Jessica said she has discovered that living in North Alabama is a special thing.
“I am so thankful for area code 256,” she said. “The support for Kruz and Paizlee is phenomenal. They just had a color run at Highland Park Elementary for them. The kids just love Kruz and Paizlee. I was just boo-hooing. It is the most humbling part — to see kids supporting Kruz and Paizlee. If it were up to kids to fund this research, it would already be funded.”
The Davenports had hoped to be on their way to the beach in a few days. They do what they can to stay active as a family, but Kyle and Jessica live minute-by-minute guided by the medical needs of their children.
The beach will have to wait. And it will. It’ll be there waiting when the time is right for the Davenports.
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