Happy Heart Walk/Week History
The Happy Heart Walk started in 2013 on behalf of our second son, Henry. At 3 months of age, after very slow growth and a series of tests, he was admitted to Children's Hospital Oakland, for failure to thrive. Within 24 hours of being admitted, we learned that Henry was in serious heart failure. He had a confirmed diagnosis of severe Dilated Cardiomyopathy, meaning that the left ventricle of his heart was extremely enlarged. We spent the next 5 weeks in the Pediatric ICU trying to get Henry's heart function stable, and to get him strong enough to come off of his intravenous medications and on to oral ones so that we could bring him back home. After weeks of inpatient care, we were able to come home and have been trying to have as "normal" of a life as possible.
Even though Henry was stable, he was still in heart failure, and many other facets of his life were very difficult. Just before his first birthday, we received results back from genetic testing that revealed why Henry still had Dilated Cardiomyopathy and why it still had not healed. He has a very rare genetic disorder called Barth syndrome. Barth syndrome primarily affects males, with fewer than 500 confirmed cases world-wide, although many more probably exist but are undiagnosed. Only 200-300 individuals worldwide are living with this disease. The cardinal characteristics of this multi-system disorder include cardiomyopathy, neutropenia (low white blood cells that can make one prone to infection), muscle weakness, exercise intolerance, growth delay and extreme fatigue. Historically, boys died of heart failure or infection before three years of age, but today with improved diagnosis and management, hopefully Henry's survival rate will be much brighter.
The past 12 years have been quite a journey. They have included some of the most difficult and trying times we have ever known, but have also been so full of feeling very loved and supported by our family, friends, and community. Without this support group, we are not sure how our family would be surviving! We are so thankful to live in this area, surrounded by the best medical care possible. And we are so very fortunate to be surrounded by very compassionate and generous people. Several times over the years, we have been stopped on the street and told how much Henry has been thought about and prayed for by complete strangers. He is touching lives beyond our own family.
In February 2013, we hosted The 1st Annual Happy Heart Walk at the Lafayette Reservoir for our extended family and close friends. The purpose was to simply honor Henry and to promote awareness of Pediatric Cardiomyopathy, for at that time we had a beautiful but very sick baby, and no diagnosis. By February 2014, we had the Barth diagnosis and were on a mission to help find a treatment or cure (there is none). Nearly 200 people gathered at the Lafayette Reservoir for the 2nd Annual Happy Heart Walk for a walk around the Reservoir and a very special picnic, raising funds just over $10,000 to support Barth Syndrome Foundation (BSF), the sole organization helping to find a treatment or a cure for the boys and men affected. In February 2015, 350 people gathered for the 3rd Annual Happy Heart Walk, and collectively raised over $20,000 for the Foundation. It was a beautiful day.
In 2016, the format of this event looked a bit different; due to the unforeseen craziness of life with 3 little boys, we simply could not pull off an actual event. So we got creative and Happy Heart Week 2016 took place the first week of May, centered around Henry's birthday, May 2nd. Happy Heart Week was a very successful virtual event, in which a lot of great awareness was raised, not to mention a lot of money sent straight to Barth Syndrome Foundation, near $25,000. We repeated the same format in 2017, and raised $50,000. 2018 continued to prove that Happy Heart Week as a virtual event can be extremely successful, as we brought in over $73,000 and several new followers that now know about Barth Syndrome. And in 2019, nearly $90,000 went to BSF from the generous supporters of Happy Heart Week. Even though 2020 was wrought with uncertainty, fear, and sadness in our world, HHW still generated $77,000 for BSF and sent out 350 brightly colored HAPPY shirts all over the country. And in 2021…over $100,000 was sent directly to the Barth Syndrome Foundation, and another 300 HAPPY shirts out into the world to brighten the days of those around. Nothing short of amazing!
For 2022, the 10th Annual Happy Heart Week, we hosted an epic event celebrating Henry's 10 years of life and 10 years of Happy Heart. In addition to the traditional virtual week, 200 people gathered at the 10th Anniversary Happy Heart Party for a beautiful evening of food, friends, auctions, and dancing. At the end of this big celebration week, $250,000 was raised. It was incredible to say the least.
2023 held our traditional virtual week, sending over $120,000. And for this year, 2024, we plan to cross the $1,000,000 mark of total dollars raised by HHW, and cross the 1000 mark of total number of HAPPY shirts sold.
We are so proud of this Village that we call HHW! Together, over 11 years, HHW has sent $871,000 to the Barth Syndrome Foundation, and brought awareness to several hundreds of people that otherwise might not have ever heard of Barth syndrome. While no cure or treatment exists yet, the tremendous strides we have seen over these past 11 years are remarkable. We are hopeful that something good is on the horizon, and it would not be possible without your help.
Thank you for being a part of this!
Even though Henry was stable, he was still in heart failure, and many other facets of his life were very difficult. Just before his first birthday, we received results back from genetic testing that revealed why Henry still had Dilated Cardiomyopathy and why it still had not healed. He has a very rare genetic disorder called Barth syndrome. Barth syndrome primarily affects males, with fewer than 500 confirmed cases world-wide, although many more probably exist but are undiagnosed. Only 200-300 individuals worldwide are living with this disease. The cardinal characteristics of this multi-system disorder include cardiomyopathy, neutropenia (low white blood cells that can make one prone to infection), muscle weakness, exercise intolerance, growth delay and extreme fatigue. Historically, boys died of heart failure or infection before three years of age, but today with improved diagnosis and management, hopefully Henry's survival rate will be much brighter.
The past 12 years have been quite a journey. They have included some of the most difficult and trying times we have ever known, but have also been so full of feeling very loved and supported by our family, friends, and community. Without this support group, we are not sure how our family would be surviving! We are so thankful to live in this area, surrounded by the best medical care possible. And we are so very fortunate to be surrounded by very compassionate and generous people. Several times over the years, we have been stopped on the street and told how much Henry has been thought about and prayed for by complete strangers. He is touching lives beyond our own family.
In February 2013, we hosted The 1st Annual Happy Heart Walk at the Lafayette Reservoir for our extended family and close friends. The purpose was to simply honor Henry and to promote awareness of Pediatric Cardiomyopathy, for at that time we had a beautiful but very sick baby, and no diagnosis. By February 2014, we had the Barth diagnosis and were on a mission to help find a treatment or cure (there is none). Nearly 200 people gathered at the Lafayette Reservoir for the 2nd Annual Happy Heart Walk for a walk around the Reservoir and a very special picnic, raising funds just over $10,000 to support Barth Syndrome Foundation (BSF), the sole organization helping to find a treatment or a cure for the boys and men affected. In February 2015, 350 people gathered for the 3rd Annual Happy Heart Walk, and collectively raised over $20,000 for the Foundation. It was a beautiful day.
In 2016, the format of this event looked a bit different; due to the unforeseen craziness of life with 3 little boys, we simply could not pull off an actual event. So we got creative and Happy Heart Week 2016 took place the first week of May, centered around Henry's birthday, May 2nd. Happy Heart Week was a very successful virtual event, in which a lot of great awareness was raised, not to mention a lot of money sent straight to Barth Syndrome Foundation, near $25,000. We repeated the same format in 2017, and raised $50,000. 2018 continued to prove that Happy Heart Week as a virtual event can be extremely successful, as we brought in over $73,000 and several new followers that now know about Barth Syndrome. And in 2019, nearly $90,000 went to BSF from the generous supporters of Happy Heart Week. Even though 2020 was wrought with uncertainty, fear, and sadness in our world, HHW still generated $77,000 for BSF and sent out 350 brightly colored HAPPY shirts all over the country. And in 2021…over $100,000 was sent directly to the Barth Syndrome Foundation, and another 300 HAPPY shirts out into the world to brighten the days of those around. Nothing short of amazing!
For 2022, the 10th Annual Happy Heart Week, we hosted an epic event celebrating Henry's 10 years of life and 10 years of Happy Heart. In addition to the traditional virtual week, 200 people gathered at the 10th Anniversary Happy Heart Party for a beautiful evening of food, friends, auctions, and dancing. At the end of this big celebration week, $250,000 was raised. It was incredible to say the least.
2023 held our traditional virtual week, sending over $120,000. And for this year, 2024, we plan to cross the $1,000,000 mark of total dollars raised by HHW, and cross the 1000 mark of total number of HAPPY shirts sold.
We are so proud of this Village that we call HHW! Together, over 11 years, HHW has sent $871,000 to the Barth Syndrome Foundation, and brought awareness to several hundreds of people that otherwise might not have ever heard of Barth syndrome. While no cure or treatment exists yet, the tremendous strides we have seen over these past 11 years are remarkable. We are hopeful that something good is on the horizon, and it would not be possible without your help.
Thank you for being a part of this!
The Happy Heart received it's name from a proverb that a dear friend sent me when Henry was first in the hospital in 2012 with very severe heart failure:
"A happy heart makes the face cheerful..." Proverbs 15:13
What this meant to us as parents is that even though Henry's heart has been "sick", it has still been happy. And that has always shown on his face, through all that he has been through. His health and circumstance do not determine his joy! His joy comes from the Lord, and that is what we strive to implement in our own lives daily. May this little boy inspire you to look past your circumstances for joy, and to endure even when it's hard.
"A happy heart makes the face cheerful..." Proverbs 15:13
What this meant to us as parents is that even though Henry's heart has been "sick", it has still been happy. And that has always shown on his face, through all that he has been through. His health and circumstance do not determine his joy! His joy comes from the Lord, and that is what we strive to implement in our own lives daily. May this little boy inspire you to look past your circumstances for joy, and to endure even when it's hard.
Join us in raising awareness of Barth syndrome and raising the necessary funds to find a cure for this awful disease.