Local family fighting the odds, looking for funding to help save - WAFF-TV: News, Weather and Sports for Huntsville, AL

Local family fighting the odds, looking for funding to help save their children

MUSCLE SHOALS, AL (WAFF) -

A North Alabama mother and father are doing everything they can to save the lives of their two children. Both have an extremely rare disease.

There has been very little research done on the disease because there have been only 50 documented cases worldwide of the genetic disorder.

But with some help, the Muscle Shoals parents are working raise funding dollars.

Four-year-old Kruz Davenport likes to swing and he loves dinosaurs. His sister, two-year-old Paizlee, is a spirited ball of energy.

Something they have in common is a disease that many doctors could not diagnose. Their parents, Kyle and Jessica Davenport, say when Kruz was a baby he was often sick, and he wasn't growing.

It wasn’t until his first birthday that they noticed his eyes seemed to be sensitive to light. Doctors couldn’t pinpoint what was wrong—it took them 18 months to discover the problem.

"They sent us for genetic testing after that and found out he has what they call SIOD," Kyle said.
Schimke immuno-osseous dysplasia, or SIOD, is a type of dwarfism that is so rare that Kruz is one of only five confirmed cases in the United States. One of the other four is his sister.

They are the only siblings ever known to both have the genetic disorder.

The life expectancy for a child with SIOD is 10 years. It leaves no immune system, and there is no cure. As the family discovered, there also was no funding for studying the disease.

"There was no research for it. There was no path. Nothing to go on," Kyle said.

Through a family who lost a child to SIOD, the Davenports were directed to scientists, and started the Kruz'n for a Kure Foundation. The non-profit charity has already raised $500,000 of the $6 million needed for research at Stanford University.

Florence Councilman David Bradley wanted to help the family after he heard the Davenports story from his wife.

"You see someone trying so desperately to try and save their children, we should do anything we can," Bradley said.

He has arranged a meeting with Congressman Robert Aderholt and his staff when the family will make their case for grant funding. The meeting in Washington, D.C., is scheduled in for next week.

Some would say this family has been struck with awful luck. The odds of siblings sharing this extremely rare disorder are astronomical.

But Jessica and Kyle Davenport said if you take one look at Kruz and Paizlee, you'll know why their family is blessed.

"The story in itself of what they've been through and the smile on their face, it'll brighten anybody's day. It changes your whole perspective on life," Kyle said.

Kyle is donating his kidney to his son, who needs daily dialysis. His wife, Jessica, will donate hers to their daughter.

There is hope that research on SIOD can help people with other diseases.

For more information about the Kruz'n for a Kure Foundation, go the charity's website and its Facebook page.

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