Salt Lake City girl fighting ‘bubble boy disease’ to get rare organ transplant
October 30, 2017
Calla Hauenstein will endure a rare organ transplant Monday as the 3-year-old continues her battle against Severe Combined Immunodeficiency Disease — better known as “bubble boy syndrome.”
Calla of Salt Lake City was the first infant in the state of Utah diagnosed with SCID, which was detected thanks to newborn screening, said her father, Logan Hauenstein.
Despite his daughter’s struggles — a blur of chemotherapy treatments, hospital visits and complete home isolation — Logan considers the family fortunate.
“It’s been a really long road,” Logan said Friday from the hospital. “But a lot of things had to happen right to get to this point, and we’re really lucky it all worked out.”
Their latest journey began in Aspen, Colorado last week with AeroAngel, a nonprofit group that finds and uses private, unoccupied aircraft to safely fly people who need critical medical care but are too ill to fly on a commercial flight.
The all-volunteer organization is based in Denver but helps people anywhere on a needs basis, said Mark Pestal, AeroAngel founder and president.
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The key, he said, is being able to secure the many resources — a jet, pilot, fuel and funding — in time.
In Calla’s case, as with most transplant recipients, timing is everything.
After an unsuccessful bone marrow transplant, Calla’s parents learned she would need a new thymus, which Logan said is “extremely uncommon.” The organ, located near the heart, is critical for the immune system.
Logan, who spent nearly two years researching Calla’s rare condition and options for treatment, said only one doctor in the United States performs thymus transplants.
Dr. Mary Louise Markert resides at Duke University Hospital in Raleigh-Durham, North Carolina, where the Hauenstein family arrived mid-week via AeroAngel and Aspen pilot Richard “Bubba” Collins.
“It was a real honor to be a part of it,” said Collins, who volunteered his time, plane and the fuel. “I hope to do them more often and hope more people get involved.”
Dr. Markert called Logan and his wife, Jody Bell, about a week and a half ago to let them know she had a thymus donation for Calla. They needed to be at the hospital in four days.
Calla’s immune system is so depleted that her parents removed their 5-year-old son, Tatum, from day care to eliminate his exposure to germs; Jody Bell quit her job to care for both children full-time; Logan works from home and the local grocery store delivers their food.
Flying a commercial airline to Raleigh was out of the question, Logan said, and chartering an air ambulance ranged between $50,000 and $90,000.
“There’s definitely a sense of urgency,” he said. “As soon as (an organ) is removed, there’s a ticking clock for successfully performing a transplant.”
The family’s other option was to drive more than 30 hours from Utah to North Carolina. That 2,100-mile journey would have posed its own risks with hotel germs and required them to scramble to leave the next day.
“It just doesn’t give you much time to arrange everything,” Logan said.
When Logan learned about AeroAngel and called Pestal to see about the possibility of a flight, Logan was not optimistic.
“I thought, ‘What are the chances it’s going to actually work out?'” Logan recalled.
But Pestal, with the help of Collins, was determined to make it happen.
Collins, owner of Bubba Air charter, said the experience “was definitely worthwhile.” An attorney for the federal government, Pestal co-piloted the Pilatus P.C. 12 to Raleigh.
Since launching AeroAngel in 2010, the organization has transported more than 70 people in need of medical care, according to Pestal, including two Basalt residents in 2013 and 2015.
The nonprofit’s latest mission is to acquire its own aircraft so it can increase its operations. AeroAngel hosted a fundraiser last month at Sardy-Field and Pestal said the Aspen community showed “overwhelming support.”
For families such as the Hauensteins, AeroAngel is a life-saving effort.
“It just gave us such an amazing start to our journey with the (organ) transplant,” Logan said.
Erica Robbie is a report for The Aspen Times, a sister paper of The Park Record. For more coverage from The Aspen Times, click here. If you have questions about this article for The Park Record, you may contact Engagement Editor Kira Hoffelmeyer.