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A Breath of Fresh Air

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A Breath of Fresh Air
A gift from the Wyss Foundation elevates CHOP's research in thoracic insufficiency syndrome, a rare and complex condition.
September 24, 2024
Klaire, with her mother, Diemmah

When Klaire was born, her lungs were too small and weak to get the necessary oxygen to her bloodstream. She was diagnosed with thoracic insufficiency syndrome (TIS), a complex condition involving chest wall deformities that affect normal breathing and lung growth.

You’d never know that now, watching her sing and dance, a healthy 8-year-old.

At only a few months old, Klaire received a vertical expandable prosthetic titanium rib (VEPTR) implant at Children's Hospital of Philadelphia's Wyss/Campbell Center for Thoracic Insufficiency Syndrome (CTIS). It changed everything. 

Now, thanks to a $5 million gift from the Wyss Foundation, CHOP can help a lot more kids like Klaire.

A history of support

Hansjörg Wyss, philanthropist and chairman of the Wyss Foundation, has supported TIS research for decades. In the late 1980s, he met Robert Campbell Jr., MD, an orthopedic surgeon with a prototype of what would become VEPTR. The device was surgically placed on a child’s rib cage to expand the chest cavity, allowing for proper lung growth while also correcting spinal deformities. Dr. Campbell was aware of the risk that children with TIS would die because there were no treatments available, and he believed this implant could save lives.

However, manufacturers did not adopt the invention; they said it was too expensive to develop and produce a device to treat diseases that affected so few children. But Mr. Wyss, whose own company made orthopedic devices, saw VEPTR’s clinical potential for saving lives and agreed to manufacture it with the understanding that he and his company would never earn a profit from the device. Since then, VEPTR has saved thousands of lives and remains the only FDA-approved device to treat TIS.

Building a legacy at CHOP

In 2008, CHOP recruited Dr. Campbell to build CTIS, the first national, multidisciplinary program devoted solely to the treatment of TIS. The center has provided thousands of TIS patients with transformative care and is one of CHOP’s specially designated Frontier Programs.

After Dr. Campbell’s untimely death in 2018, Mr. Wyss made a $5 million gift to honor his friend and fund the newly named Wyss/Campbell Center for Thoracic Insufficiency Syndrome at CHOP. Now, with the most recent gift from the Wyss Foundation, Mr. Wyss’s contributions to CHOP total $10 million. The Wyss Foundation’s support will help ensure that the center and its clinical team, researchers and patients have the resources needed to thrive.

“The generosity of Hansjörg Wyss and the Wyss Foundation is powering critical scientific advancements, fueling groundbreaking clinical research and directly improving the healthcare of children, specifically those in under-resourced families,” says Jack Flynn, MD, Chief of the Orthopedics Center at CHOP. “This support is providing our clinicians with the vital platform for innovation to make tangible improvements in the lives of the patient families we serve.” 

“CHOP's approach is very multidisciplinary, where we partner with pulmonology, physical therapy, anesthesia and critical care, respiratory therapy, nutrition, neurology, and neurosurgery to take care of our patients,” adds center director Patrick Cahill, MD, a pediatric spine specialist. “It’s extraordinarily exciting to be in a place where there is an almost instantaneous impact of research on clinical care, and, in turn, where patient problems inform the direction of research. The gift from the Wyss Foundation makes that possible.”

“CHOP is making vital contributions to pediatric health, enabling children to live longer, healthier lives,” says Molly McUsic, President of the Wyss Foundation. “The Wyss Foundation is honored to support the team working to improve the quality of life for children living with TIS.”

'You could see the relief in her’

Klaire walking with her mother
Eventually, Klaire was strong enough to have her VEPTR removed.
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When Klaire received her VEPTR implant, her mother, Diemmah, noticed an immediate difference.

“You could see the relief in her," says Diemmah. "She wasn’t just lying there; she wasn’t just existing. She was starting to move; she was starting to do more than just respond with her eyes.”

Klaire returned to CHOP every six to eight months to have her VEPTR expanded so she could continue to grow. Eventually, she was doing so well that she was strong enough to have her VEPTR removed and no longer needed a ventilator to breathe. Today, she breathes on her own, without any support.

In May 2023, Klaire and her family attended the CHOP-sponsored CTIS Reunion at the Philadelphia Zoo. In the company of fellow patients, new friends and families, Klaire received a special certificate of achievement for “graduating” from CTIS. 

Answers for our most vulnerable patients

No parent wants to go through what Diemmah did. But if it had to happen, she says, she’s glad it happened at CHOP.

“The nurses were great, and the doctors were wonderful. If I had a hundred questions, they would answer every one of them.”

Some of those answers were made possible with help from Mr. Wyss and the Wyss Foundation. “The progress we have made is possible because of this crucial backing,” Dr. Flynn says, “and we are excited to reach new milestones in the years to come.”

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