Do you hear that? That’s the sound of thousands of people cheering on Kruz and Paizlee 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), a multisystem disorder that is inherited in an autosomal recessive pattern. SIOD impacts the body in many ways, including kidney failure, a weak immune system, and hip dysplasia.
“There was a 1 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 to Palo Alto so their children have access to the best care and a chance for a brighter future. They have built close relationships with researchers at Packard Children’s and work tirelessly to raise funds for SIOD research.
“We strive every day to not only give Kruz and Paizlee a promising life, but to give the other children all over the world a chance as well,” says Jessica. “Continued funding is paramount for such an extremely rare condition. Your support saves precious lives.”
Because SIOD leads to kidney failure, Kruz and Paizlee will undergo a kidney transplant at Packard Children’s. 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 have an allogeneic hematopoietic stem cell transplant. 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 amazing doctors who are now our stem cell transplant and kidney transplant teams. Dr. Lewis (in immunology) and Dr. Bertania (in stem cell transplantation) have taken so much time with our family explaining every detail to make sure we felt comfortable. 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. “Kruzn for a Kure Foundation is providing life-saving research funding to allow these children to have a treatment plan and a chance at longer life. For the first time, SIOD research at Stanford has a promising chance to actually cure this incurable disease. We are so grateful for our donors who support Kruz, Paizlee, and other children with SIOD.”
And we’re deeply grateful, too. Kruz and Paizlee’s supporters number in the thousands, and we are honored to have so many of you Scampering with us remotely!
Kruz and Paizlee are #WhyWeScamper.
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