Finding confidence, community, and care at specially tailored camps

I was recently in a pediatrician’s office when I noticed a sticker for Camp Bon Coeur, or “Camp Good Heart.” The camp is in my home state of Louisiana and serves children with heart conditions. It made me think about children with pulmonary hypertension (PH) who can benefit from a medically supported camp like this.

Camp Bon Coeur specializes in accommodations for children with various types of heart conditions. Medical staff are with the children at all times and are aware of the children’s conditions before they arrive.

It’s wonderful that children who would otherwise be unable to attend camp are packing their bags and heading there. Some of them travel great distances to attend. I’d love to see more places like this for children with complex health conditions.

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That thought made me recall a podcast I heard last year from the Phaware Global Association: “Episode 510 — Drs. Kevin and Heather Shannon” of the “I’m Aware That I’m Rare: the phaware podcast.” It’s a heartfelt episode that shares the beginnings of Camp del Corazon in California, and how a mother wanted her child to go to camp but was too concerned to send him 1,500 miles away to a camp in Louisiana by himself for a week. I get that!

This was only the beginning of their story, though. The child’s physicians helped establish Camp del Corazon, which is similar to Camp Bon Coeur. It has been around since 1995 and has grown notably over the years. But the podcast episode also made me think about something deeper than camp itself: Do we teach our children to hide scars?

No more hiding scars

Many of the children with cardiac conditions have scars from surgeries. Sometimes the children feel embarrassed or self-conscious, so they hide their scars. Kevin Shannon says this particular child had never taken his shirt off in front of anyone before except his best friend. It’s painful to hear that and to imagine what that family went through.

These camps give children a place to gather with others like them, allowing them to be kids, have fun, compare scars — rather than hide them — and gain confidence. I imagine the mother and both Kevin and Heather Shannon could see this young boy healing emotionally as the week unfolded.

I think about how meaningful it is to be around other pulmonary hypertension patients at events, and how much it means to have people understand what we’re going through. I can’t begin to imagine how isolating it must feel for a child who is still trying to understand their own condition while also navigating peers and adults who may not understand it either.

I think these camps can be life-changing. I looked into it and found a website called VerySpecialCamps, which lists camps available for various specialties across the country. If you know of a child or teen who could use some summer fun, please send them the information.

I’d also like to send a thank you to Phaware, an advocacy partner of Pulmonary Hypertension News that was, according to Phaware’s website, “founded by a group of pulmonary hypertension awareness activists” with the mission of “creating global pulmonary hypertension awareness through engagement and innovation to forge a new course to a cure.”

If you haven’t heard their podcast, which is nearing its 600th episode, please check it out. I am on Episode 507, and my fellow Pulmonary Hypertension News columnist Jen Cueva is on Episode 509. If you’d like to be on it, there is a simple sign-up form on their website at phaware.global.

There is a wealth of information in these podcasts, and we can learn so much from one another!

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.