"All I could think about was, 'I cannot lose both of my kids,'" their mom shared.
Kruz and Paizlee Davenport have been diagnosed with Schimke immuno-osseous dysplasia (SIOD), a rare and fatal form of dwarfism that causes kidney failure, short stature, skeletal dysplasia, migraines, a high risk of stroke and seizures, and a weakened immune system. The rare disorder has a life expectancy of 9-11 years. Determined not to give up on their children, their parents established a foundation to help find a cure.
Kruz was first diagnosed with the condition and "there was a one-in-80-million chance" his sister would have it too. Their mom Jessica told PEOPLE, "And then she tested positive. All I could think about was, 'I cannot lose both of my kids.' " Jessica and her husband, Kyle, were both carriers of the gene mutation that causes SIOD — called SMARCAL1. They had passed it on to both kids, "so that was pretty crazy odds right there," she said.
We would go to the end of the world for Kruz & Paizlee, and we made it to the Pacific Ocean. #raisingawarenessforSIOD #1stsiblingsinUS pic.twitter.com/Twe0GW1gx2
— Kruzn For A Kure Foundation (@Kruznforakure) January 16, 2017
In 2016, the couple started 'Kruzn For A Kure Foundation' to raise funding for research. "We started from scratch, finding a doctor to take this on since there wasn’t anyone actively working at the time of our diagnosis in 2016. We wanted to honestly give hope again to SIOD families across the world and honor the ones who lost their child to this horrific disease," they said on their website.
It's been an emotionally and physically challenging time for the family. Jessica quit her job as a dental hygienist to care for her children full-time. They were terrified in 2017 when Kruz's kidney failed, and the couple thought "we were going to lose him," she said. "But I knew I had to wake up and just put one foot in front of the other. We'd do anything for our kids," she added. Fortunately with the help of Dr. David Lewis, an immunologist and leading expert in SIOD, at Stanford Medicine Children's Health, and with his team, including Dr. Alice Bertaina and Dr. Paul Grimm they did a procedure that ended up saving the young boy's life.
Parents Raise $3 Million to Save Their Kids' Lives from Fatal Form of Dwarfism: 'We'd Do Anything' https://t.co/LfbNUOiHkO
— People (@people) February 8, 2023
The determined parents kept pushing to fund research for the condition and first started by selling $5 bracelets and T-shirts and within months raised $100,000. Over time the charity raised over $3 million, with the average donation being just $25.
"To know you could potentially lose both of your children by nine years old, it’s an unbearable pain as a parent. You’re mourning something that hasn’t happened yet. Then on the flip side of that, you have this fire that just lit inside of you and are ready to take on the world to fight with everything you have to save them. And that’s what we did," the couple said.
The children Kruz, now 9, and Paizlee, 8, are believed to be the only the first known sibling pair diagnosed with the disease. Although they do suffer from symptoms of the rare condition, they are considered to be walking miracles. Their mom is ready to raise another $3 million and is determined to continue the mission. She shared, "We had no one, and no hope for our kids besides our faith. "As a mother, I want to make sure these families, who are newly diagnosed, have somewhere to turn, so they can go to sleep at night and know that there's hope," she added.
References:
https://www.kruznforakure.org/our-story
Cover Image Source: YouTube | Kruzn for a Kure Foundation
