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, six years old & Paizlee, four years old- 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.
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.
In 2016, we 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. Thankfully, a doctor at Stanford, Dr. Dave Lewis took on our research. (Dr. Lewis was referred to us by Dr. Boerkoel, who found the SMARCAL1 mutation in SIOD years prior.)
Kyle & I had to learn and live in a philanthropic and scientific world quickly. I’m a dental hygienist by trade, and he’s a toolmaker/machinist so you can imagine the nonprofit sector being new to us. Our community rallied with us, alongside us, and lifted us on the hard days. Our story spread further and further in our local community and social media. We’re blessed to live in such a giving small town in Muscle Shoals, AL. Since starting our nonprofit, we’ve raised almost 1.5 million dollars, mainly by a lot of people doing a little bit. For the last two years, we’ve sustained sending $30,000 monthly to keep salaries and supplies funded in Dr. Lewis’ SIOD lab. All donations primarily funded by individual donors within our community or social media.
When you see pictures of Kruz & Paizlee sometimes it’s hard to see past their beautiful smiles at the destruction disease carries in their bodies. They are little people and quite frankly, the cutest. For the past three years, we’ve been required to keep our children in a semi bubble. SIOD took over their immune system, destroying their T cells, which are essential in fighting infections. They were stripped from their bible school and never attended birthday parties, indoor play places, or even stepped foot into a grocery store. All while my son, Kruz, went into kidney failure on May 8th, 2017 and lived connected to his dialysis machine every night. We watched his symptoms take over first, and as much as we prayed, our daughter would be less severe, soon her started. The plan for their care wasn’t ideal- That was until SIOD research, and our team of doctors at Stanford came up with an idea. Dr. Lewis soon introduced us to a doctor named Dr. Alice Bertaina, who is an expert in her field of stem cell transplantation. She gave us hope our children could have new immune systems, which is vital in the longevity of our children overcoming their disease. She explained a stem cell transplant before a kidney transplant from the same parent donor would be ideal, taking into consideration the extent of SIOD.
January 5th, 2019, Kyle and I packed our lives up. We took only the necessities and moved our family from our home in Alabama to Stanford in Palo Alto, CA. I donated stem cells to my son, Kruz, on February 5th, to give him a brand new immune system with beautiful new T cells. We soon realized we would be in California longer than expected. We realized to ensure their care, so we made the difficult decision to sell our house in Alabama. Our home sold with a day being on the market, so we knew it was meant to be. Plus, you will do anything to save your children, a home can be replaced, Kruz & Paizlee cannot. Kruz did exceptionally well during his stem cell transplant. Then, I was blessed as a mother to give life again - after 790 days of nightly dialysis, I donated my kidney to him on July 9th, 2019. He recovered tremendous, and since he also has my immune system from the stem cell transplant, he shouldn’t need a long term anti-rejection medication. Kyle will follow the same treatment plant for Paizlee, donating stem cells to her on August 14th, 2019, and followed by a kidney transplant if and when the time comes. He cannot wait to give his girl a beautiful new life.
We have lived at the Ronald McDonald House at Stanford since January 5th, 2019 and are not expected to head home anytime soon. We truly know we are where we need to be. We committed to our children to do everything possible to change “incurable” into CURABLE, and we thank God every day for allowing us to be here.
Our children have been pricked for labs more times than we can count. At times they only knew life inside a hospital, and I can only imagine the testimony they will both be able to stand to tell one day. We are fighting, not only for Kruz and Paizlee but for the other five children living in the United States with Schimke Immuno Osseous Dysplasia. There are also families around the world who need our help and DEPEND on this life-saving research.
We will cure SIOD.
Will you join our fight?