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Congenital Heart Disease

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A camp with heart

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.”

Charity Matters.

 

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Copyright © 2018 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

February is all about heart….

It is February and National Heart Month, tomorrow is Valentine’s Day and for next 48 hours the world will be full of hearts, candy, paper and real ones. This is the time of year when we think about love and what our hearts do and it is also a time to take a pause and think about what happens when our hearts are broken?

One out of 110 children will be born this year with congenital heart disease, over 40,000 children. What does that look like for those families? Over the years I have met a number of these resilient, brave and courageous parents and each one inspires me with their passion and commitment to their child. Their journeys are extraordinary and as a result so are these miraculous children who come through this, like dear Max Page we discussed  last week.

On Thursday, we will meet Lisa Knight, a pediatric nurse who has been working with thousands of these amazing children. Her story and nonprofit will melt your heart. Until then, feel that beating heart of yours, be grateful for your health, all of the love in your life and be sure to share the love wherever you can. The world will be better today because of you.

Charity Matters.

 

Sharing is caring, if you are so moved or inspired, we would love you to share this to inspire another.

Copyright © 2018 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

Max: A Force for Goodness

 

All of you who have been reading Charity Matters for the past few years know that Max Page  and his family have become dear friends to Charity Matters. You may remember Max as Little Darth Vadar of the infamous Super Bowl commercial a few years back or from a number of posts we have done featuring his incredible philanthropic work over the years.

I met Max and the Page family through our mutual work at Childrens Hospital Los Angeles, where Max has spent a lot of time over the years. Max was born with a congenital heart defect and over the course of the last 13 years has had 12 surgeries. This past week Max went through yet another surgery on his heart,his 13th,  to replace a valve that his body has outgrown. Each year over 40,000 are born with congenital heart disease.

His mother Jennifer said, “When Max was an infant, he had an incredible will to live. At age 4, he asked how much surgery would hurt? At 7, he wanted to know why he needed to go through with this and now at 10 he is keenly aware of time and how precious it is.”

Max and his family have used his celebrity and innate goodness as a platform for so many wonderful causes. He is wise beyond his years and he and his brother are two of the most philanthropic young people I have ever had the privilege of knowing, thanks to their inspiring parents.

Max as always uses his experience to make others lives better, even at the tender age of 13. His hope is that if someone is inspired to do something because of his journey, that they would consider supporting a place that has given him so much and become a second home, Children’s Hospital Los Angeles and the Heart Ambassadors program. Max recently said in an interview with Today, “I’m going to do whatever I can to help and do the best to bring awareness to kids like me.”  Max you already have and we are cheering you on during your recovery.

Charity Matters.

 

Sharing is caring, if you are so moved or inspired, we would love you to share this to inspire another.

Copyright © 2018 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

 

 

The heart warming follow up of Saving Tiny Hearts

“If someone had raised funds for research for us 30 years ago and our baby was given a chance to live. Ten years from now will be a whole different ball game into medicine, science and technology into heart defect research.  We don’t want to wait for what doctors say ‘will be….’ we want to fund research to change the future for ‘what can be…’ for all children, like my beautiful Joshua suffering from heart disease.  Out of our heartache, there is hope….”

The words above were sent to me five years ago from non-profit founder, mother and champion for families dealing with congenital heart disease, Francie Paul.  I spoke with Francie and board chair of Saving Tiny Hearts, Larry Kluge, to see what has happened since they began this journey over a decade ago to bring awareness and research to Congenital heart disease .

CM: What do you want people to know about Congenital Heart Disease?

Francie: I want people to know that twice as many children die from heart disease versus all pediatric cancers combined and that cancer receives five times the funding for research.

Larry: Over a million children are born each year with congenital heart disease.

CM: What is your goal at Saving Tiny Hearts?

Francie: Our goal is to fund a project that will not only save our son’s life but to ensure that no one else should ever have to go through this.

Larry: We have been able to fund over 30 research projects that keep getting us closer to making this a dream a reality. We want to find the answer that makes Saving Tiny Hearts obsolete.

CM: What keeps you going?

Larry: The love, passion and support of our community is extraordinary and the researchers we support.

Francie: People carry you through your darkest days and they have made our journey all the more humbling. It is the heart, hope and passion of our team. We are all a part of this.

As Francie said, five years ago “Out of our heartache there is hope.”

 

Charity Matters.

 

Copyright © 2017 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

February is heart month

Today is February 1st and the beginning of heart month. Over the years, I have interviewed a number of non-profit founders who have started incredible organizations to find a cure for congenital heart disease, which is the number one birth defect in the world.

This month, I will share some of those stories with you and re-visit some old Charity Matters friends to update you on their progress. I came across musician and heart transplant recipient, Paul Cardall’s video the other day and thought it sets the stage for this important month.

So, as we begin the month of February, let’s all remember to keep our hearts open to those who suffer with this horrible disease.

 

Charity Matters.

 

Copyright © 2017 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

February is all about heart

pediatric cardioloy

February is a month about love, and the heart. It is a time for cupids, Valentines and a time to talk from the heart and about it. Talking about the heart and from the heart are not always easy. This month, with my Dad’s recent heart troubles, my heart is heavy thinking about families whose children suffer from congenital heart disease or CHD.

It always hard when someone you love is sick but when it is a child the challenge is even greater. I came across this for an upcoming event and thought it shared the parent’s perspective.

Did you know that……

  • Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide
  • About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States (approx. 40,000/year)
  • Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined.

So when I was told by a friend, whose son suffered from CHD, about Its My Heart, I was determined to share it with you. Its My Heart.Org‘s goal is to provide strength and support for those affected by Congenital Heart Defects.Their goal is to be a resource for families who are not sure where to turn when their child is diagnosed with Congenital Heart Disease. They create networks among families, groups, hospitals, and the community and even provide grief counseling for families in need. Their goal is to make your heart lighter when someone you love is suffering from CHD.

So, as we enter the month of love, from my heart to yours I wish you a very happy and healthy heart month.

Charity Matters.

Copyright © 2014 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

 

Camp del Corazon, camp for more than broken hearts

Have you ever been invited to an event when someone is being honored? I was recently invited to something for a friend of mine, who is one of those very generous souls that does so much with no attention to himself. He is being honored by Camp del Corazon.

As I am beginning to think of my children’s summer plans, I wanted to know more about this place. This camp isn’t just for anyone but for children who have congenital heart disease and typically can not experience camp or exercise in many cases.  My friend knows about this first hand as his child has also had multiple surgeries.

Camp del Corazon (Camp of the Heart) was inspired by a patient, of Dr. Kevin Shannon, who had undergone an operation that dramatically improved the function of his heart but he was still suffering from emotional pain. He was back in school, back in little league baseball but he was so embarrassed by his scars that he wouldn’t remove his shirt.

Dr. Shannon felt that if his patient could spend time with other kids who’d had heart surgery, he’d be less self-conscious. When Dr. Shannon discussed the situation with Lisa Knight, R.N., her solution was simple: “We can do that.” And so they did.

This doctor and nurse set about fund-raising to ensure that the medically-supervised summer camp would be free for children ages 7-17 who had heart disease. When Camp del Corazon began in 1995, they had 49 campers on beautiful Catalina Island , today the camp has  close to 300 campers. Camp del Corazon is staffed completely by volunteer counselors, nurses, and physicians who give of their hearts to help these special kids.

Camp del Corazon has grown into a non-profit dedicated to providing programs for children and families living with heart disease. A camp that more than lives up to its name, just like those that support it. Big hearts all the way around.

Charity Matters.

Copyright © 2012 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.


Saving Tiny Hearts

There is always that defining moment. We each have them, some bigger than others.  On August 11th, 2005 Francie Paul had that moment when she gave birth to her son, Joshua. Francie’s moment was more than that of a proud new and tired mother but one of concern.  Four hours after his birth, Joshua was rushed from the local hospital where he was quickly diagnosed with Severe Complex Congenital Heart Disease.

It is there is that moment, that small space in time that having a sick child will either destroy you or define you. The Paul family had that moment, frustrated and angry with their son’s condition.

“Like many parents in our position, we became very angry and once the dust settled we considered litigation as a course of action. After meeting with high-profile medical-malpractice attorneys in Chicago we decided that this route was clearly not for us. In the elevator on the way out of one of the attorney’s offices we called Brian’s (my husband) corporate attorney to find out how to start a Public Charity. We felt channeling our energy into something positive instead of something negative (like litigation) would be much healthier and fulfilling way for us focus our efforts.”

The result of that frustration and emotion was channeled into the creation of Saving Tiny Hearts.org  Since 2006, the Saving tiny Hearts Society has been working to fulfill its mission of raising seed money for grossly under-funded, lifesaving research of congenital heart defects . This seed funding acts as a bridge for this research to millions of dollars of extramural funding from the National Institute of Health. To date Saving Tiny Hearts has funded five (5) research projects.

Today, Joshua is thriving and the Paul families change of heart from anger to action became that moment that matters. Their heart has helped thousands of tiny hearts. Charity Matters.

Copyright © 2012 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.


Hopeful Hearts Foundation

I recently met an amazing mom at Childrens Hospital Los Angeles, who shared with me her son’s journey of Congenital Heart Disease. February being heart month, I wanted to share this story, about her friends the Chez family. A true story of the heart.

Adam and Terra Chez are parents whose three children were all born with Congenital Heart Disease.  Although, 1 out of every 100 babies are born with congenital heart defects, discovering that all your children suffer is an unimaginable and overwhelming experience. The Chez family discovered that their twins, Gracie and Luke had congenital heart disease in utero.

Their twins both had open heart surgeries in their first six months of life. Gracie had a second surgery and then died unexpectedly at age 3 on January 9, 2008. Despite their shock and despair the Chez family was determined  to keep their sweet daughter’s  memory alive.

“God showed us simply how much we are not in control of anyone’s destiny, not even our children, nothing can change the ultimate plan God has for us.  Our hearts began to feel the need to help others; it was then that we decided to pour our hearts into a foundation and give back. In April of 2008, Hopeful Hearts was established.”

Hopeful Hearts goal has been to help build both awareness and support for all families that have been affected by congenital heart disease. The Chez are committed to helping fund research for heart valve replacement and for the care involved from the corrective surgery through the healing and recovery process.

The following year, in August 2009, Adam and Terra were blessed with another child, Abigail, who also suffered from the disease.

Now with renewed determination to help families like their own, Adam and Terra have committed to promoting the health of children with congenital heart defects and cardiac disease, while honoring their children Luke and Abbey who live with Tetralogy of Fallot and the memory of their daughter Gracie. ” Our hearts are filled with the loving memory of our daughter and hope for the future of Luke, Abbey and all children who confront congenital heart disease with courageous hearts.”

“Our life was forever changed after finding out about our children’s heart conditions.  Our hope was to possibly find a way to bring families together and support those who were going through the same devastating experience we ourselves had been through. We wanted to be able to give back for all that we felt was given to us, through God’s Grace.”

A true story of love and making a difference for others from the heart.

Charity Matters.

Copyright © 2012 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.