Alabama family rallies the community to raise funds for life-saving research.
Do you hear that? That’s the sound of thousands of people cheering on Kruz and Paizlee Davenport all the way from Alabama.
They have quite the fan club back home, and it’s not hard to see how they’ve inspired so many strangers to come together for a common cause.
The siblings are two of just five children in the United States who have Schimke immuno-osseous dysplasia (SIOD), an extremely rare form of dwarfism with a life expectancy of nine to 11 years. It can cause kidney failure, a weak immune system, and hip dysplasia.
“There was a one in 80 million chance both Kruz and Paizlee would have SIOD,” says their mother, Jessica. She and her husband, Kyle, have moved their family temporarily from Muscle Shoals, Alabama, to Palo Alto so their children have access to the best care and a chance for a brighter future.
Because SIOD leads to kidney failure, Kruz, 5, and Paizlee, 4, will undergo a kidney transplant at Lucile Packard Children’s Hospital Stanford. Today, Kruz is already on dialysis and Paizlee is being monitored and treated by our nephrology team. Another way SIOD expresses itself is T-cell deficiency, leading to a weak immune system. Kruz was recently the first SIOD patient to receive a donor’s stem cells. Paizlee is undergoing evaluation for her stem cell transplant soon. Down the road, the siblings will also need hip reconstruction surgery to combat dysplasia.
“Stanford and Dr. David Lewis graciously took on SIOD research in 2017, which led to meeting Dr. Alice Bertaina and the amazing doctors who are now our stem cell transplant and kidney transplant teams,” says Jessica. “We feel blessed to have Kruz and Paizlee in the best care facility in the world.”
As the first siblings with SIOD in the country, they have become ambassadors for the condition and share their experiences through their family’s foundation, Kruzn for a Kure. Jessica recently presented Lewis with a check for $150,000, bringing their total funds donated to more than $1.3 million.
“Kruzn for a Kure Foundation is providing life-saving research funding to allow these children to have a treatment plan and a chance at a longer life,” says Jessica. “For the first time, SIOD research at Stanford has a promising chance to actually cure this incurable disease. We are so grateful for the donors who support Kruz, Paizlee, and other children with SIOD.”
On June 23, Kruz and Paizlee will be Patient Heroes at the 9th annual Summer Scamper, helping to raise money and awareness for Packard Children’s and Stanford University School of Medicine.
We are honored to have so many supporters from near and far Scamper-ing to support patients like Kruz and Paizlee!
This article originally appeared in the Spring 2019 issue of Packard Children’s News.