(WHNT) – Like most mothers, Jessica Davenport has a full plate. But what’s on that plate is a little different for her children, Kruz and Paizlee.
“We drive [Paizlee] three days a week to Birmingham for 3.5 hours of dialysis,” Davenport said.
The reason is Schimke Immuno-Oseeous Dysplasia, or SIOD. It’s changed their lives.
“It’s a rare and potentially fatal form of dwarfism,” Davenport explained. “Life expectancy is nine to eleven years old. We’re fighting really hard to change that.”
There was a one in three million chance Jessica and her husband Kyle shared the same mutated gene that causes the disease and a one in four chance they’d pass it along to their children. After Kruz was diagnosed, the Davenports learned his little sister Paizlee has it too.
“She made them a one in eighty million chance so we knew we were picked for this mountain to climb,” Davenport said.
In the beginning there was no active research going on, and talks with doctors weren’t promising.
“He actually told us to not take research on again, to just raise money for our family and treat the symptoms,” said Davenport.
Her children are two of only five children living with SIOD in this country. Though rare, she knows it devastates the families it affects.
She wanted them and every child like them to have options, so she started the Kruzn for a Kure Foundation, raising money to get research started to find answers.
“We started with no research, to now we’re waiting on test results to come back to possible identify 12 drugs that can help all children around the world with SIOD,” Davenport said.
That research, taking place at Stanford, is paid for by fundraisers and people across the valley.
“We live in a very very amazing community,” said Davenport. “Everyone collectively helps us send $30,000 a month.”
She gives everything to their little ones, even donated stem cells and organs, all as part of their fight. But their foundation helps fight for families they don’t even know.
“They have a plan and their parents have hope now, because of the Kruzn for a Kure Foundation,” said Davenport. “You wonder what’s it all for. But the children all around the world now have hope.”
She’s changing lives. But all she sees are the little smiles on her children’s faces.
“Their fighting tenacity through this has been unbelievable,” she said. “I’m proud of them, I’m really proud of my kids.”
Join us March 6, 2020 on WHNT News 19 This Morning for a big reveal of our “Most Remarkable” semi-finalist. That woman will win a trip to New York City to attend The Mel Robbins Show.
Cummings Aerospace recognizes Remarkable Women.