One mother is celebrating a breakthrough that all started with her two kids in North Alabama.
Jessica Davenport from Muscle Shoals has been fighting for her kids ever since they were diagnosed with an extremely rare genetic disease called schimke immuno-osseous dysplasia (SIOD). They are the first siblings in the United States to ever both be diagnosed.
But instead of seeing this diagnosis as a burden, their mother saw it as an opportunity.
“I always knew they were going to provide a medical breakthrough. I just didn’t know what it looked like,” said Davenport.
Her son, Kruz, was not 3 years old when he was quite diagnosed with SIOD. Davenport said the first line of the literature passed out six years ago called it a “rare and fatal form of dwarfism.”
After hearing the diagnosis, Davenport had her 1-year-old daughter, Paizlee, tested as well. There was a 1-in-80-million chance for the two siblings to both have this rare disease, and the test came back positive.
“As a mom, you can’t lose both of your kids. And that’s all I could think about, is I’m not losing both of my kids,” she said.
The average life expectancy is about 9 years old, and traditional SIOD treatment is basically managing symptoms. Davenport wanted to do more.
“You got to have a couple days to yourself just to get it out, and then stand back up and start fighting. We started with $5 bracelets,” she said.
Those $5 bracelets soon turned into a full blown, $100,000 foundation, all to start research into this rare genetic disease. Stanford Children’s Health in California quickly picked up that research.
“(Dr. Alice Bertaina) was the first doctor who looked at me and said, ‘Hey, I can help your kids. I need you to trust me,'” said Davenport.
Bertaina is the mastermind behind a breakthrough study in which the patient receives a stem cell transplant before a kidney transplant, with both the stem cells and the kidney coming from the same parent donor.
“The immune system of the patient becomes the immune system of the donor, and so when we give the kidney, the kidney is accepted,” Bertaina explained.
For the first time ever, children like Kruz and Paizlee won’t need to rely on immunosuppression drugs after their transplant.
“Seeing Kruz and Paizlee coming back home without dialysis and starting to have a life, that was almost miraculous,” said Bertaina.
In 2019, Davenport and Kruz underwent the stem cell kidney transplant. After seeing their success, Davenport’s husband, Kyle, soon did the same for their daughter, Paizlee.
“When it comes to your kids, you’ll do anything,” said Davenport.
She said it was never a question for her and her husband to donate their kidneys to their kids. After a successful operation, Davenport is excited to celebrate Kruz will be his ninth birthday next month.
The Davenport family is able to fund new research through donations to their foundation, “Kruzn for a Kure”.