Meet Our Founders
We are the Davenport family! As you can see, we have the two of the cutest kids on the planet with the sweetest personalities. Kruz & Paizlee rarely meet a stranger, but their life is different from others. On June 30th, 2016, our son was diagnosed with a rare genetic and “incurable” disease called, Schimke Immuno Osseous Dysplasia (SIOD).
From the time he was nine months old, we spent two years and went through at least ten specialists to help us put together the puzzle. Later, we genetically tested our daughter out of precaution since it’s a recessive mutation, even though she presented no clinical symptom at that time. On August 24th, 2016, we received a call explaining she also had SIOD. Our world turned upside down. Our children were the first siblings in the United States, making this a 1 in 80 million chance.
The Research
We provide life-saving research funding to allow children diagnosed with Schimke Immuno-osseous Dysplasia to have a treatment plan and a chance at a longer life. Dr. Lewis and his team have began unraveling the mystery of how SMARCAL1 protein deficiency leads to the clinical features of SIOD.
Our Vision:
Accelerating new therapies and treatments for SIOD patients
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Meet Kruz and Paizlee
Kruz Davenport
Paizlee Davenport
Kruz was diagnosed with SIOD just days before his third birthday. He received an allogeneic stem cell transplant at Stanford by Dr. Alice Bertaina and had a kidney transplant in 2019.
Paizlee was a year and a half old when she was diagnosed with SIOD. She was only tested because her brother was diagnosed. Her diagnosis made she and her brother a 1 in 80 million chance and the first siblings in the United States.
Thank you to our partners and teams involved in the research to find a cure
Finding a cure for Schimke Immuno Osseus Dysplasia (SIOD)
Our Mission:
We help to accelerate the development and delivery of new therapies and treatments, and facilitate a place of hope for SIOD families and their children with information and resources to help them navigate life with this disease.