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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday!

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Shannon O'Donnell - phaware® interview 383

Sep 6, 2022

Pulmonary Hypertension patient Shannon O'Donnell was diagnosed with PH at age six.  Shannon discusses the importance of PH kids getting to attend summer camps geared to children impacted with rare disease, including Paul and Joanne Newman's The Hole In the Wall Gang Camp and Serious Fun Network.

My name is Shannon O'Donnell. I'm from Boston, Massachusetts. I would like to talk about the importance of going to camp either as a pulmonary hypertension patient individually, or as a family. I was diagnosed with pulmonary hypertension at age six. This was all the way back in the dark ages of pulmonary hypertension treatment development in 2001, where there were actually no pediatric treatments approved.

Through a support group, we found camp. The camp I went to was The Hole in the Wall Gang Camp, which was the original camp Paul Newman and Joanne Woodward, founded in memory of their son. In their latest documentary about their life, The Last of Movie Stars, which is now on HBO Max. If you have HBO Max, go watch it. Camp is such a big part of their lives. They created it to give kids like me and other PH kids, a place to be kids… and to raise a little hell, because that was his saying from his movies, especially Bush Cassidy and the Sundance Kid. He was like, "I want kids to be able to go raise a little hell and be kids!"

Now, The Hole in the Wall Gang camp has combined with Serious Fun Network, and they have camps all over the United States. We have won opening in Maryland in the next couple of years. We are opening one in India this coming summer. It's just growing beyond Paul Newman and Joanne's dream. It makes me so happy because now other kids in those areas are going to get the same experience I did.

We were all pretty nervous, especially Dr. Mary Mullen, my PH doctor. But she let me do it anyway. She said, "You got to go be a kid," which I feel like most pediatric doctors are saying now. When we found camp, I was still considered newly diagnosed, because I wasn't stable. A friend of mine had gone to camp the previous year and she was the first PH patient they had ever accepted. Then, they just started accepting me, and then a few others came along from the clinic here in Boston.

It was pretty scary, because that first summer when you're on a central line you're not allowed to swim. But that first summer, that part of the paperwork packet for all the medical stuff went to my pediatrician and he checked off, yes! So, I got to go do the illegal PH activity of swimming at a very, very sterile pool. I promise you, it is very sterile. I can picture other parents' faces now of kids on central lines. I promise you, the doctor went with my unit to the pool. Every time I went to the pool, the nurses came with me in case my bandage fell off or my extension tubing fell out of the pelican box. There was always a nurse with me that first summer whenever I went to the pool.

When I came home, I told my parents I wanted to go back, because I had never felt so refreshed. I never felt like a kid, because I was diagnosed so young. You're told you're not allowed to jump, skip, hop, run, do jump rope. I felt so included. Even with all these restrictions that you get as a pediatric PH patient, they made me feel included in every activity we did. They found workarounds. They found ways to make me feel included in the more strenuous activities. This wasn't the first year, but one of the years I went to camp with a line repair. They gave me pom poms to cheer on the other kids, because I wasn't allowed to do anything dangerous.

I was in public school pretty much my whole elementary through high school. I wasn't allowed to do gym classes. Because I wasn't in gym classes, I never got to play the parachute game; the get to know you icebreakers that were physical. Camp let me do the physical ones. I got to lift up the parachute and then a counselor would run in for me. What other camp in the world would do that for a sick kid? No one, no other camp. This was in the early 2000s before inclusion became such an important part of society.

I was very lucky. I got to do the individual sessions, which were just for me. Then, my parents and I got to do these family weekends where the whole family got to go. I was reunited with friends, and at the time my parents were working for the camp doing the parent programming, so they were reunited with their friends. It was just fun for us overall because they got to see what I got to do as a camper, which was pretty much sit in arts and crafts and do arts and crafts all day. There would just be glitter, paint, messes everywhere. It was okay, because my mom didn't have to clean it up. It was the staff's responsibility. But I did help clean up because that's how my parents raised me. It allowed my parents to feel like normal parents. It allowed me to feel like a normal kid. It was great.

I would say if you were on the fence about sending your child to camp or thinking of doing the family weekends, do it, because you get to have time to yourself and time for your kid to have me time. Getting that me time on both ends is so important. Then when it's at camp, there are trained doctors and nurses. There are trained staff. A lot of the volunteers are pre-med students. Doctors go. Your child will never be medically safer than other than a hospital. They have their own medical building. Each camp has a building devoted to medical supplies.

If your child needs a band-aid, they got band-aids. They need ice packs, they got ice packs. if they're on Flolan. If they need feeding tubes, they can do the feeds. They're highly trained. If your child has sickle cell, they're trained on doing the sickle cell injections and all that. Or even getting an IV started. Anything your child needs, they're willing to be trained on and do it to make your child happy and to give them their best summer.

After I aged out at 17, because I did the teen program, I loved it so much I started volunteering as a camper to tell my story. Then as I grew up, they gave me harder and harder jobs at the events we would go to. Now as an adult, I'm a tour guide. I get to talk to the celebrities at our big donor gala. At our last big gala before COVID I met the main actor from Grace and Frankie. It was great!

My name is Shannon O'Donnell, and I am aware that I am rare.

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