Legacy of the Pinwheel | chILD Foundation

When Gregory "Alex" Porta was born in 1994, he struggled to breathe. Alex was oxygen-dependent and, as his unknown disease progressed, his family and physicians raced to find answers while the little boy fought to survive. Eventually Alex's doctors and parents were left with only one treatment option — a double lung transplant.

The boy received his new lungs in 1999 at a Saint Louis, Missouri transplant center. Alex's quality of life improved, and not long after the transplant, Alex was photographed for a brochure detailing the hospital's lung program. The photo chosen for publication showed Alex spinning a pinwheel with a puff of air from his new lungs.

"The pinwheel symbolized air flowing freely — an iconic children's toy gloriously whirling on a gust from the lungs of a child who could finally breathe."

But Alex's good health didn't last. His body began to reject the new lungs. On June 14, 2002, Alex lost his lifelong battle with what is now identified as a form of Children's Interstitial Lung Disease (chILD).

Two years after Alex Porta's death, Dr. Robin Deterding — Director of the Breathing Institute at The Children's Hospital and Chair of the Children's Interstitial Lung Disease Research Network (chILDRN) — applied for an R13 grant from the National Institutes of Health to fund the first conference for pediatric interstitial lung disease, held in conjunction with a Rare Lung Disease Consortium Conference. The Portas and four other families significantly affected by a lung disorder were invited to share their experiences with conference attendees.

During the conference, physicians formed what is now known as the chILD Research Network (chILDRN) and approached these families, asking them to form a family foundation. The group that emerged was first known as the Pediatric Interstitial Lung Disease Foundation — and later became the chILD Foundation.

During the group's first meeting, families shared similar concerns and concluded that it was vital to connect with other parents with youngsters affected by chILD while advocating for research and seeking a cure for all children. In the process of getting to know one another, stories were told and photos exchanged. Alex's photo inspired the founders of the fledgling organization to unanimously settle on the pinwheel as the Foundation's logo.