Kruz was born on July 16, 2013. He flat-lined and immediately delivered via Cesarean Section. He was not breathing when he was born but, thanks to a great team of doctors and nurses, he was revived and sent to a special NICU in Huntsville, Alabama. He weighed in at 3 lbs 6 oz and was 16 inches long. Kruz did really well while in the NICU and got to go home on August 6, 2013. By all appearances, at that time, he was a normal, beautiful, healthy baby boy.
Around his 1st birthday, we found out we were expecting his baby sister, Paizlee. She was born healthy at 39 weeks via cesarean section. She was the most beautiful dark headed baby girl you have ever seen. She was perfect! Everything was perfect, except we started noticing around that time, Kruz was extra sensitive to light.
Over the next 2 years, Kruz saw 10 specialist and had test after test. We finally landed in a Nephrologist’s office at Children’s in Birmingham, Alabama. An ultrasound showed that he only had one kidney and a urine test showed he had nephrotic syndrome (a kidney disorder that causes the kidneys to excrete too much protein in the urine). We found out his T-cells are very low which causes him to have an extremely low immune system. He was also never on the growth curve. Thankfully, Dr. Monica Cramer, the Nephrologist realized that these symptoms were not normal and she did a lot of research before she started him on any drugs that could have made him worse.
Genetic testing was performed in June 2016. The tests revealed that he has a disease called Schimke Immuno-Osseous Dysplasia (SIOD). This is a VERY rare form of dwarfism. The fact that he is a little person was not the most serious part. This form of dwarfism comes along with renal failure, vascular problems and a weakened immune system. It is a fatal disease with no cure. Children with SIOD will have to have a kidney transplant and still have a life expectancy of only 9-11 years.
In order for him to have this disease, Kyle and I had to carry a recessive gene called a SMARCAL1 gene. There was a 1-in-3 million chance that we would carry this gene, meet and another 25% our child would recieve both mutated copies and cause this disease active. There are only around 50 known cases of this disease in the world, with only five 5 in the United States. Kruz is“number 4” and now Paizlee is "number 5". First sibling set in the country.
We tested Paizlee out of routine after Kruz. We were not suspecting her to have this, because she had none of the symptoms that Kruz had. On Aug 22, 2016 Paizlee's results came back. She was confirmed to have the same gene path as Kruz, making her the "number 5" documented case of SIOD in the US. She is most likely the youngest ever diagnosed. Devastation wasn't even the word we felt. Both of our babies are 2 out of 5 cases of an extremely dangerous, rare disease right here in Muscle Shoals, AL. For a parent to hear you have to raise a certain amount of money for your kids to have a chance at life is unreal.
We will FIGHT!!!
Statistics and life expectancy are just a number to us. We are fighters and we are ready to see this through to prolong life for our children and find a cure. Please find it in your hearts to donate towards getting research funded. We HOPE and BELIEVE that through GOD and your help, our babies can be the change. We now need action.
Love and may God bless you always,
-Kyle, Jessica, Kruz, and Paizlee Davenport