Patients Reach New Heights at Camp

At a camp nestled in the foothills of the Angeles National Forest, Angie sails through the sky on a zipline, Edrey rides a horse, and Esteban navigates a ropes course 30 feet in the air.

For many of our young patients, participating in these kinds of activities is often unimaginable. But for a group of patients and their families, it became a reality last April when UCSF Benioff Children’s Hospital San Francisco sent them to The Painted Turtle, a camp created especially for children with severe medical challenges.

“UCSF saved Megan’s life multiple times. If she had been born somewhere else, it’s not likely she would be here today.” – Kristin Chaset, Megan’s mother

It was a breath of fresh air, literally, for these children afflicted with pulmonary hypertension (PH), a rare, life-threatening disease characterized by dangerously high blood pressure in the lungs, which puts extra stress on the heart and can cause it to fail.

“To see our patients so excited to do things they had never done before, just hanging out and acting like regular kids, was incredible,” says Dr. Jeffrey Fineman, vice chair of pediatrics and chief of critical care medicine at UCSF Benioff San Francisco. “This camp was the most special thing I have been associated with in my career.”

That’s saying a lot for Dr. Fineman, a renowned specialist in pediatric PH whose research has led to new treatment options, including inhaled nitric oxide, which has emerged rapidly as an important therapeutic agent. For decades, UCSF Benioff San Francisco has been one of the world's leading centers for the treatment of pediatric PH, participating in multiple clinical trials that have been translated into successful treatments.

Due in large part to this work, the five-year survival rate for pediatric PH has skyrocketed from 40% to 80% in the last 15 years.

“While that’s a dramatic improvement, there’s still no cure, so we need to keep working to find new therapies,” Dr. Fineman says.

Megan, the 21-month-old daughter of Nick and Kristin Chaset, is thriving because of new treatments and the expert care she received at UCSF. After two open-heart surgeries, one within hours of being born, and a nearly yearlong stay in the hospital, Megan now lives at home with her family. But she still receives ventilation and oxygen constantly through a tracheostomy tube and takes as many as 16 medications a day.

“There’s no question that without the medication she is on, Megan would not be alive today – and that did not exist until five years ago,” Dr. Fineman says.

It’s thanks to the Chasets that the group made the trip to The Painted Turtle, which offers all the joys of camp along with state-of-the-art medical facilities.

“UCSF saved Megan’s life multiple times,” Kristin says. “If she had been born somewhere else, it’s not likely she would be here today. So we felt a strong need to give back. They came to us with this idea of camp and it was like a light switch.”

Even though it was unlikely Megan would be able to go, Nick and Kristin raised over $55,000 through an online auction, charity event, and donations so that patients and their families, many of whom have limited means, could attend camp for free.

After the success with fundraising, pediatric nurse practitioner Claire Parker took charge of logistics. In the end, Nick and Kristin decided to bring Megan, despite the challenges of traveling. It was transformative for the whole family: Megan got to play with horses, her older sister Cora bonded with other patients and their siblings, and the Chasets forged strong connections with parents.

“We built a real community around a very scary thing that affects all our children,” Kristin says. “When you walk away with that, it’s invaluable. The love and support was electric.”

Dr. Fineman and the Chasets hope to make the camp an annual event, to give kids and their families a break from the challenges of their daily lives.

“I take delight in seeing patients like Megan happy, but I know she’s got a long fight ahead of her,” Dr. Fineman says. “The prize we have our eyes on is for her to be a normal adult. When I get invited to her wedding – that’s when I will really feel good.”