One-year-old Dean was born last September, a happy and seemingly healthy baby. So, when Razan and her husband Hisham received a call from the hospital after returning home, the news was unexpected — and overwhelming. Dean underwent a routine screening for Severe Combined Immunodeficiency (SCID), a rare genetic disorder, and the results confirmed a diagnosis of Artemis deficiency, an even rarer form that occurs in about one in three million infants.
SCIDS, also referred to as Bubble Boy Disease, dramatically altered the first year of Dean’s life. “He was isolated for seven months,” says Razan. “He was in the hospital receiving treatment, a bone marrow transplant, and gene therapy.” To add to the worry, the treatment Dean needed was only available at UCSF — more than 400 miles away from their home in Irvine, California. Thankfully, the family found a home away from home at Family House San Francisco, a nonprofit providing lodging for pediatric patient families, and finally returned home this past May.
But getting home wasn’t easy. Dean couldn’t fly commercially because of his health, so the family opted to drive the eight hours back home. “Dean was miserable,” says Razan. “He was only seven months old, and we had to make multiple stops.” That’s why the family was extra thankful when they learned about Angel Flight West and were provided with a flight for Dean’s first follow-up appointment — and for all his appointments since. “It was an amazing experience,” says Razan. “We got there in two hours, and we didn’t have to deal with any of the misery.”
Knowing Dean will need to return to USCF every three months for the next two years, Razan is grateful to be able to count on AFW’s volunteer pilots, hoping to keep Dean infection-free by staying away from crowded airports. Razan says an added benefit is watching Dean experience the joy of flying after missing out on other experiences during his first year of life. “We want him to see the world, to see things he’s never seen before,” she says.
Today, Dean is thriving, having went from a “bubble boy to a social butterfly,” says Razan. He’s a happy baby, enjoys being outside, and he loves vehicles — including planes.
Moved by their compassion, the family will always remember the kindness of AFW’s volunteers. “We’ll never forget how they treat us,” says Razan. “For many years, we’ll tell Dean about these pilots.”
“They’re playing a huge role in saving our baby’s life.”
