Lisa Knight

February is here and with it comes Valentine’s Day, Presidents Day, and of course heart month. In the past decade, we have talked to a number of organizations that focus on the heart. For good reason, one out of for deaths each year is from heart disease. The translation is that over 659,000 people die in the United alone each year from heart disease. These are not just statistics but real people. To visualize this number that is over six huge football stadiums full of people each year. One person every 36 seconds, not to mention the 40,000 children will be born with congenital heart disease this year. So what do we do when are our hearts are broken?

Luckily for us, there are a multitude of amazing organizations working tirelessly to solve and tend to this problem. I thought before the month jumped into high gear we could take a moment to revisit some of the great organizations we have met who are working to reduce those numbers. Some of these go back so far that I felt like I was looking at old friends, I hope you feel the same.

Hopeful Hearts Foundation

A decade ago we talked to the Chez family about their organization, The Hopeful Hearts Foundation. The Chez family had three children all born with Congenital Heart Disease. Tragically they lost their daughter Gracie suddenly at the age of three and created the Hopeful Hearts Foundation in 2008 to keep her memory alive and to help other children suffering from CHD. The Hopeful Hearts Foundation supports families whose children have CHD and also raises funds to provide research for Congenital Heart Disease.

Camp Del Corazon

Some of you may remember Lisa Knight, a registered nurse and nonprofit founder of Camp Del Corazon. The camp is a place for children with heart-related health challenges to have fun, make friends and find fellow children going through similar health issues.

Lisa said, ” I get so filled up by it all. These kids have survived death, there are no camps for these types of kids due to their medical conditions. It transforms them. You see them show each other their scars. The most rewarding thing is when you hear children call you by your camp name when you see them years later not at camp. This year our first camper is coming back as a counselor, so to see not only these children grow up and give back but to watch my own 29-year-old daughter getting even more involved as she takes on more responsibility with her role at Camp del Corazon, is so rewarding. “

Mended Hearts

In 2017, we talked to our friends the Page family about their experience with Congenital Heart Disease in our post The Heart of the Matter. In that conversation, we learned about Max Page’s support of the organization Mended Hearts. A nonprofit that was created in 1951 to give peer support to those dealing with heart disease. Dr. Harken asked four of the first four people to ever have open heart surgery to help others facing the same experience. In 2004, Mended Hearts realized that families with children suffering from CHD also needed that same peer-to-peer support and created Mended Little Hearts.

There are hundreds of organizations working tirelessly to do research to cure Congenital Heart Disease. These are just a few of the amazing people working to heal broken hearts. Next week we will continue our look back with Francie Paul from Saving Tiny Hearts in our podcast. I’m so excited to share our conversation about the incredible work she and her team have been doing to help find a cure. Until then, wishing you all a wonderful heart month full of love.

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While I know it is February and summer and camp seem to feel like a million years from now, I had an incredible conversation last week with an amazing human named Lisa Knight, who runs a camp (Camp del Corozon) for children who are living with heart disease. Since February is National Heart month this seemed like the perfect time to discuss our mutual challenges of running nonprofit camps but more specifically Lisa’s incredible work as a registered nurse and nonprofit founder, serving children with heart disease. I hope you enjoy our conversation half as much as I did.

Charity Matters: What was the moment you knew you needed to start Camp Del Corozon?

Lisa Knight: In 1995, I was working with Dr. Kevin Shannon with pediatric heart patients and we had a mother who came in to see us. Her son had multiple heart surgeries and was depressed. He didn’t want to go to sleepover or PE class because he was embarrassed about all of his scars and he didn’t feel like a “normal kid.” I suggested to Dr. Shannon that maybe we should try to send him to camp and began to look for a camp that could manage his health challenges or that would take him. There was only one, it was very far away and very expensive. So I suggested that we try to create our own.

Dr. Shannon loved the idea. I reached out to my friends in Catalina that had a camp and asked if we could come for a week with some heart patients, they agreed. We asked all our doctor and nurse friends to volunteer and within two months we had 49 heart patients and 100 volunteers coming to camp for free.

Charity Matters: What challenges did you have?

Lisa Knight: We had NO money, We maxed out credit cards, were not totally sure what we were doing but we were sure we should be doing this. Then we had a surgeon named Jerry Bucklin, who gave us $5000 to make it happen and we did.

Charity Matters: What fuels you to keep doing this work?

Lisa Knight: I get so filled up by it all. These kids have survived death, there are not camps for these types of kids due to their medical conditions. It transforms them. You see them show each other their scars. The most rewarding thing is when you hear children call you by your camp name, when you see them years later not at camp. This year our first camper is coming back as a counselor, so to see not only these children grow up and give back but to watch my own 29-year-old daughter getting even more involved as she takes on more responsibility with her role at Camp del Corozon, is so rewarding.

Charity Matters: Tell us about your successes at Camp del Corozon?

Lisa Knight: I think our successes is that thousands of children have been able to come to camp, to make friends, become more confident and just feel like regular kids.I think back to when we began and am so proud that it is continuing and going on. I get joy out of all our success, each child, each camp. This summer we will have close to 400 campers who will come to camp for free. Twenty-three years later that feels pretty amazing.

Charity Matters: What life lesson have you learned from this experience?

Lisa Knight: I’ve learned so much, how to dream dreams, connect the dots and make things happen. I have learned gratitude after having so many struggles and I have learned that there is nothing better in life than service, you simply cannot be happy without it.

Charity Matters: How has this changed you?

Lisa Knight: I feel that Camp del Corozon was just supposed to be. This is my whole life. I feel that I am on a chess board and God just pushes me in the direction I am supposed to go.”

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