Cirrus will fly child with rare disorder to treatmentCaleb Nord is just 20 months old, but he already has a fight on his hands. “A grandma always thinks that her grandchild is one in a million,” said Rhonda Peterson of Duluth, whose daughter is Caleb’s mother. “I never knew that would be literal. What Caleb has is a one-in-a-million (disorder).”
By: John Lundy, Duluth News Tribune
Caleb Nord is just 20 months old, but he already has a fight on his hands.
“A grandma always thinks that her grandchild is one in a million,” said Rhonda Peterson of Duluth, whose daughter is Caleb’s mother. “I never knew that would be literal. What Caleb has is a one-in-a-million (disorder).”
Caleb’s body is in danger, and he needs help. Some of that help will come next week, courtesy of Duluth-based Cirrus Aircraft.
Caleb, who lives in White Bear Lake, Minn., with his mom, dad and big sister, has a form of histiocytic disorder, specifically familial hemophagocytic lymphohistiocytosis (FHL-V). That means something is genetically amiss with his white blood cells, something that unleashes attacks against his little body’s organs. “Familial” means it’s a genetic disorder — it turns out Jeremy and Ann Nord both are carriers, although their 5-year-old daughter, Hannah, doesn’t have the disorder. The V means it’s the fifth mutation, just recently discovered, Ann Nord said.
It’s not cancer, but it’s treated in much the same way as cancer. Caleb is undergoing chemotherapy and being treated with steroids and antibiotics. He needs a bone marrow transplant.
Only five physicians in the world specialize in the disorder. One of those is Dr. Alexandra Filipovich of the Cincinnati Children’s Hospital Medical Center. Doctors at St. Paul Children’s Hospital want Caleb and his parents, Jeremy and Ann Nord, to see Filipovich, and the Nords had booked a flight on Delta Airlines.
But there were problems with that. The steroids affect Caleb’s immune system, and he needs to be infection-free before getting a bone marrow transplant, making airports and airplanes perilous. If they took a commercial flight, the doctors said, Caleb would have to wear a mask. Steroids also cause uncontrollable mood swings, and Delta officials told the Nords that if Caleb were screaming they would be put off the plane.
This brings us to Ralph and Diane Doty, Duluthians who have relocated to Florida but who were back last week for Grandma’s Marathon. Diane Doty noticed an ad in the News Tribune labeled “Carwash/cookout for Caleb,” briefly describing Caleb’s age and condition. Thinking of her own seven grandchildren (and one on the way), Diane decided the car needed washing. At the carwash, which was on June 19 at the Super America station at Woodland Avenue and St. Marie Street, the Dotys found themselves chatting with Rhonda Peterson and hearing her concerns about the Delta flight.
Ralph Doty called his brother, former Duluth Mayor Gary Doty, who sent an e-mail to his friend Bill King, vice president of business administration for Cirrus. A few more e-mails and phone calls, and it was arranged: Instead of going Delta, the Nords will take a Cirrus plane flown by a commercially licensed Cirrus pilot from St. Paul to Cincinnati on Tuesday, returning either Tuesday or Wednesday, depending on how long they need to be in the hospital.
King’s call caught her by surprise, Ann Nord said.
“I had no idea that anyone had contacted him,” she said. “I get this call and the kids are screaming and running around, and I ended up calling him back. He told me everything, and I just cried.”
King said everyone at Cirrus from the top down wanted to help.
“This is an extraordinary period of time for (the family),” King said. “We’re honored when somebody invites us to be part of a solution for somebody who’s in a world of hurt. … It’s not ‘maybe we’ll help,’ but ‘how can we help?’ ”
Gary Doty noted how everything came together: a visit to Duluth, an ad in the paper, a casual conversation at a carwash, a couple of people connecting with a couple of other people.
“God puts his little people in different places to help out,” he said. “I believe there’s a grand scheme that God has — to get everyone together and to put it together so quickly.”