MUSCLE SHOALS, Ala. - A Shoals couple is hoping this will be a better year than what their family had in 2016. And thanks to many of you, their situation is already looking up.
When we first met the Davenport family last September, they'd just found out why their 3-year-old son Kruz wasn't growing as quickly as other kids his age. His mother Jessica explained, "Schimke Immune-Oseeous Dysplasia. It's a really rare form of dwarfism.”
It can cause kidney failure, risk of stroke and heart disease. Schimke has changed their lives in more ways than one. Two months after Kruz was diagnosed, the Davenports were told his little sister Paizlee has it too. “Every day's a battle but we're fighting for them,” Jessica said.
There was a one in three million chance Jessica and 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. “Right now there’s no cure, no treatment,” Jessica told us. “There's nothing."
Kruz and Paizlee are two of half a dozen kids in the U.S. with the disease.
Since we brought you their story last fall, the family has been raising money to fund research in hopes it could lead to a drug that could help Kruz and Paizlee and other SIOD kids live into adulthood, well past the life expectancy of 9 to 11 years. So far, they're raised close to a quarter of a million dollars. In our earlier interview, Jessica told us, “We needed $3 million yesterday. That's sometimes impossible but I feel like we're taking the right steps in the right direction.”
Good news -- $250,000 is enough to get research started at Stanford. That money came from fundraisers hosted by businesses and folks from across the Tennessee valley including country music star Darryl Worley.
And the word is spreading. They’ve mailed 5,000 postcards around the world to every national news organization, celebrities like Rachael Ray and even the White House! The Davenports say they're thankful for the daily encouragement and prayers they get from people as they continue to fight for their children's lives. To keep up with how they're doing, you can follow the Kruz'n For a Kure Foundation on Facebook.