It takes a lot of work to get two toddlers through an airport and on a plane for a cross-country trip. The preparation and attention needed is multiplied when both toddlers have a rare disease that makes it almost impossible to fight off sickness.
That was Jessica and Kyle Davenport’s worry as they got their children — Kruz, 3, and Paizlee, 2 — ready for a cross-country trip to Los Angeles.
“It is very trying to keep them germ free in an airport,” Jessica said in a telephone interview from the family’s room at Hollywood Roosevelt Hotel. “Before we could sit them in their seat, we had to wipe everything down with a Lysol wipe.”
Because of the trip, the Davenport family will have a national platform to raise awareness for Schimke, and raise money to fund drug research at Stanford University.
The Davenports have taped segments for the nationally syndicated talk show “The Doctors” and “Larry King Now,” a talk show hosted by Larry King that’s available through online streaming.
“We would never travel at this time of the year if it wasn’t for the opportunity for national exposure,” Jessica Davenport said. “It is hard to talk about it and put them out there with this disease, but we have to. You never want people to look at your children any differently, but in our situation, where we have a lot of money to raise for research, we have to put them out there and talk about it.”
Schimke is characterized by short stature along with kidney failure and a weakened immune system, making any virus or infection extremely dangerous.
Kruz and Paizlee both are experiencing swelling associated with kidney disease and are at risk for stroke or heart failure. Their sodium intake is carefully monitored, and medication is used to control blood pressure.
Children diagnosed with Schimke typically live into adolescence.
Schimke is linked to the SMARCAL1 gene. Jessica said there was a one in 3 million chance both she and Kyle would be carriers, and even then only a 25 percent chance their children would be born with Schimke.
Thus far, the family has raised more than $250,000 with local fundraisers and donations, but the goal is much higher.
“Our goal is around $6 million, but we know we need to raise $3 million to keep the research going,” Jessica said. “We are living on that one ounce of hope that one day they will have the funding to do all the research to find a drug that will help prolong their life, and eventually find a cure.
“We aren’t saying they are going to find a cure for Kruz and Paizlee, but we’ve got to fund the research so they can figure it out for the future.”
This year, they hope to raise at least $1.5 million.
The family left Tuesday for California. They filmed segments for “The Doctors” on Wednesday and Friday, and filmed the “Larry King Now” appearance Thursday. The Davenports will return home today.
Jessica said she expects the episode of “The Doctors” to air in late January and the “Larry King Now” episode will stream after that.