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Heart Disease

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Health

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.

 

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Health

SADS

SADS girlI think I mentioned that heart disease is a very personal cause because it has affected my family for decades. Did I ever mention that my Dad has “died” more than a few times? Well, he has and his last episode was caused by SADS. Thankfully, he is one of the rare lucky survivors due to a defibrillator close by.

A horrible sounding name,  that conjures up unpleasant thoughts. So what is SADS? It is an acronym for  Sudden arrhythmia death syndromes. (SADS) are genetic heart conditions that can cause sudden death in young, apparently healthy people and takes approximately 4,000 young lives annually  These conditions can be treated and deaths can be prevented.

In case your interested here are the warning signs: family history of unexpected, unexplained sudden death under age 40; fainting or seizure during exercise, excitement or startle; consistent or unusual chest pain &/or shortness of breath during exercise. My Dad was on a spin bike when his heart stopped almost 2 years ago.

Until then, I had no idea that since the early 1970’s a doctor named Michael Vincent, in Salt Lake City, Utah was trying to solve this mystery of the heart which takes so many lives.  He began studying the long QT syndrome (LQTS) which is what triggers SADS (don’t dr.s just love acronyms?)

Dr. Vincent and his research team were frustrated by the number of young people with this syndrome who were undiagnosed  and at risk for dying of this disorder. It seemed that doctors were simply not aware of the problem or the ability to test for it.

[youtube=http://www.youtube.com/watch?v=4BhZcYJTJU8]

So in 1988, Dr. Vincent approached his genetics colleagues, and asked if they would be interested in attempting to find the genetic abnormality that leads to SADS. By early 1991, they had located the LQTS gene on chromosome 11.

On December 12, 1991 Dr. Vincent and colleagues established  the SADS foundation a non-profit with the purpose of helping to prevent sudden and unexpected cardiac death in children and in young adults.

Today over twenty years later, their amazing work continues to inform and save lives and there is simply nothing sad about that.

Charity Matters.

Copyright © 2013 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.

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Health

Over the rainbow

Tom NilesA friend of mine whose son suffers from a congenital heart defect recently shared this video with me. I thought I would share it with you.

Tom Riles, whose day job is the warm up act for the Ellen Degeneres Show, is the father of a child who was born with a congenital heart defect. He put this piece together with other dads whose children have also have CHD for his web-site, Life of Dad.

[youtube=http://www.youtube.com/watch?v=FP6hIQtD1Mk]

I thought it was the perfect happy way to leave you smiling this friday. A big shout out for the great voices from CHLA. Have a great weekend everyone!

Charity Matters.

Copyright © 2013 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.

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Health

Have a heart

heart stetha scopeWell it’s here! February and with that brings much more than chocolates, cupids and Valentines. February is National Heart month. Something I know you all have, a heart that is. I don’t know about your family but heart disease has struck way too close to home in mine.

My father has heart disease and has had multiple surgeries to help that big heart of his, my uncle and my grandfather have all suffered. So this month there is much to do to honor all of those whose hearts are so big that they have created organizations to help those suffering with the silent killer.

I thought to kick off February, sharing this story will both touch your heart and perhaps make you appreciate yours.

[youtube=http://www.youtube.com/watch?v=hbOHP2WRSz0]

We are all so blessed to have such wonderful hearts. Thank you for sharing yours with me today and for always knowing that Charity Matters.

Copyright © 2013 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.

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Heart Disease

The Force of Giving

Max PageOn monday we discussed how to raise philanthropic children and  I thought today I would share with you one of the best examples I know. His name is Max Page.

I met Max because he and my son are both Junior Ambassadors for Childrens Hospital Los Angeles.  Max has been a patient at CHLA many times in his short 7 years of life for multiple heart surgeries. The world knows Max as little Darth Vadar but what everyone doesn’t know is how huge that little heart really is.

http://[vimeo http://www.vimeo.com/53536378 w=500&h=281]

Max Page, Recipient of the Special Award for Charitable Works for Children’s Hospitals from American Advertising Federation on Vimeo.

Max’s parents Jennifer and Buck have guided Max and his little brother, Els, in doing things big and small for others. They have donated their birthday gifts every year, they participate in walks and runs for causes they care about and the entire family uses their voice to bring attention to causes they care about.

The Page family has taught by example the ripple effect of giving. They realized that the force comes from combining caring with action and that we all possess it. I hope the force is with you and your families throughout this holiday season.

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.

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Heart Disease

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.

[youtube=http://www.youtube.com/watch?v=Si3qHoSRPCM&feature=related]

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.


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Heart Disease

Saving Tiny Hearts Follow Up

When I set out to tell the stories of these inspirational people who have taken their pain and turned it into compassion I never knew where it would lead. I wanted to share with you this beautiful follow up from Francie Paul, the founder of Saving Tiny Hearts.Org

Here is Francie’s note:

Thank YOU for your beautiful post- we are extremely honored to have Saving tiny Hearts featured.

We did have high profile malpractice attorneys at our doorstep…practically before we were out of the hospital from Joshua’s firstheart surgery…it wasn’t who we were…our life’s mission came out of the greatest need for medicine and science into heart defects to catch up to support all children, like our little love, afflicted with heart defects.

Starting the Saving tiny Hearts Society began before our Joshua’s second heart surgery (- he has had 3) at 3 months old, after pediatric heart surgeons told us that there was a desperate need to fund research, that young hungry scientists were being turned down for government funding because they didn’t have enough monies to beef up their revolutionary proposals….which is where we would come in, to provide the seed money for it all.

Most people don’t realize that so many babies and children do not survive because of lack of research to save them.  We didn’t know that it was the #1 birth defect in the world and the #1 cause of birth defect related deaths….we didn’t know that it could happen to our baby.

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….

I don’t know if you had seen the movie ‘Something the Lord Made’ but it was an HBO movie about one of the very first heart surgeries ever performed, the Blalock-Taussig Shunt (-BT Shunt). It was the very first successful heart surgery that began with a blue baby as doctors were afraid to touch the heart and felt that of these babies wouldn’t live otherwise, so they would try this most revolutionary procedure on a baby first.  Nearly 60 years later,at 4 days old, after our baby was stabilized, he had a Blalock-Taussig shunt.

We can’t thank you enough for sharing our story; it has truly been a humbling journey for us and in the greatest of heartache, we have seen the very best in friends.  Can’t wait to read more Charity Matters and see all of the amazing things that are happening because of you.

With Gratitude & Very Best Wishes,

Francie

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.


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