Kruz and his sister Paizlee are the only known siblings diagnosed with the ultra-rare condition Schimke Immuno-Osseous Dysplasia. Their parents, Jessica and Kyle, are doing everything they can to raise money and awareness to support their children and find a cure. The original source article can be found here, at Alabama Living, with additional information from the Kruzn for a Kure website.
About Schimke Immuno-Osseous Dysplasia (SIOD)
According to the NIH, SIOD is a condition that causes short stature, a weakened immune system, and kidney disease, amongst other symptoms. The life expectancy for children born with the condition is around nine to eleven years. It is an incredibly rare condition, affecting an estimated one person in every one million to three million in North America. Only around fifty people are known to have it in the world, five of whom live in the US.
Reaching a Diagnosis
Kruz was born in 2013, and, one year later and around the time that his sister Paizlee was born, his parents began noticing that he was particularly light-sensitive.
It took two more years, ten specialists, and countless tests before doctors found out that Kruz had only one kidney and nephrotic syndrome, which caused him to have very high levels of protein in his urine. At this point, he also wasn’t following a normal growth pattern and had low levels of T cells (a type of immune cell). Genetic testing ten confirmed that he had SIOD.
Although Paizlee wasn’t showing obvious symptoms, she was tested following her brother’s diagnosis, and it was found that she also has SIOD. Kruz and Paizlee are believed to be the fourth and fifth people diagnosed with SIOD in the US.
The Kruzn for a Kure Foundation
After their children were diagnosed, Jessica and Kyle started the Kruzn for a Kure Foundation to work towards finding a cure for the rare disease. Dr David Lewis, a doctor at Stanford University School of Medicine, is researching possible treatments for SIOD, and the Kruzn for a Kure Foundation sends him $30,000 each month to fund the salaries and supplies that are needed for his lab’s work.
To reach the $30,000 needed to fund the lab’s research each month, the foundation works tirelessly to organise fundraisers, sell t-shirts and other merchandise, and encourage regular donations. This year, the foundation is expected to reach $1 million.
Dr Lewis describes the foundation as,
“one of the most remarkable things I’ve ever seen”
Kruz’s Superhero Powers
The next step for the family is a long trip to California, where Kruz will undergo a bone marrow and kidney transplant donated from one of his parents, or, as the family calls it, be given superhero powers.
Kruz’s only kidney failed a year ago, and since then he has needed dialysis. During the trip to California, which could last six months, Kruz will receive an experimental stem cell treatment as part of a clinical trial, a bone marrow transplant, and a kidney transplant. These treatments are hoped to help him so that he shouldn’t need to use a feeding tube anymore. Jessica says that she feels afraid about the clinical trial, but that she stays strong for her children.
She says,
“I know my purpose here on this earth is to help all SIOD children and families. We’re not going to stop.”
