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Resources and Stories from Angel Flight West.

Stetson’s Story: How Volunteer Pilots Aid in His Battle Against NF1

<em>Stetson prepares for his AFW flight home after his care at Logan Health Childrens in Salt Lake City UT<em>

As a middle child, eight-year-old Stetson has two siblings he loves fiercely — his 10-year-old brother Maverick and his six-year-old sister Wren. His contagious smile is captured in nearly all his photos, including those of him in hospital beds surrounded by medical equipment and beeping monitors. 

Stetson was born neurofibromatosis, or NF1, a genetic mutation found in approximately one in every 3,000 people. Typically, NF1 causes tumors to grow under the skin and on nerves, often leading to health problems affecting other parts of the body. 

Stetson’s case has been anything but typical. Besides symptoms of hearing loss, seizures, café au lait spots, headaches, and fever spikes, he was diagnosed with an optic pathway glioma, a tumor that can lead to worsening vision and other complications. “No two people with NF1 are alike,” says his mother Tatyana. “Stetson is no exception as his condition has so many complexities.” 

<em>Stetson receiving care at Primary Childrens Hospital in Salt Lake City UT<em>

The family first heard about Angel Flight West three years ago when they were gearing up to travel from their home in Kalispell, Mont. to Children’s Hospital Colorado to visit the facility’s Neurofibromatosis Clinic so Stetson could start chemotherapy for his brain tumors. Since that trip, Tatyana says their family’s been “blessed ever since with incredible pilots.” 

Those flights have also been unforgettable for Stetson. He keeps pictures of himself with AFW volunteers in a book, and he remembers and talks about each experience. “Even though he has memory loss, he can tell you about each plane and pilot,” says Tatyana.   

Most recently, the mother-and-son duo had to travel to Primary Children’s Hospital in Salt Lake City to seek second opinions from a neurooncologist and geneticist after a challenging summer for Stetson. He’s experienced speech and mobility issues, along with seizure-like episodes, sometimes having to rely on a walker or cane to move around. Once again, AFW’s volunteer pilots made the journey across state lines possible. “We wouldn’t be able to go to these specialists without Angel Flight West,” Tatyana says. “Those pilots are part of our village.”   

Stetson and Command Pilot John Kiser after an angel flight to Stetson 's care for NF1.
<em>Stetson and Command Pilot John Kiser before a flight to Stetsons care Command Pilot Kiser has flown 16 missions since he began volunteering with AFW in February<em>

Not knowing what lies ahead for Stetson has been challenging for the family, but they’re committed to finding answers and giving their son every opportunity to overcome his health trials and keep his shining smile. “The journey we’re on isn’t the best,” she says. “But the journey on angel flight is absolutely amazing.” 

And Stetson knows at the end of a long day of tests and treatment, he can count on his pilots to bring him back to the rest of his family. “I’m happy to go home,” he said before his latest angel flight, “and I’m happy they’re taking us home.”   

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