My name is Jason Wetherington and I live in Central Florida. I am the proud Dad of 10 amazing children, including 5 incredible heart warriors. Our heart journey began in October of 2010 when our third child, Isaac, was born with Hypoplastic Left Heart Syndrome. Shortly after Isaac’s birth, it was discovered that our oldest son, Koah, had 2 left sided heart defects that also required heart surgery. Immediately, we were thrust into a world we hardly even knew existed just several months earlier. The next 18 months were some of the hardest, but definitely some of the most beautiful times in our lives. Tragically, after already enduring 3 open heart surgeries, our amazing son, Isaac, left our arms for heaven in May of 2012 while in the CICU at Boston Children’s Hospital. I cannot imagine a greater despair than that we felt after losing our son. Isaac taught us so much in his short earthly life. He taught us to love, even when the pain feels overwhelming. He taught us how to fight with everything we have.
Isaac’s life, and death, radically changed our lives. He taught us to fight for the things that are really important in life. He taught us to be the voice for those who have no voice. It was part of the gift he left us. That gift led us to adoption. We learned that there were children with special needs, like our son, but they had no one to fight for them….no one to be their voice. Since losing Isaac, we have adopted 6 children with special needs, including two more heart warriors. Our 13 year old son, Brave, was 10 years old when we adopted him from China. He had completely unrepaired atypical d-TGA and a VSD. He was considered terminal in China due to the complexities of his unrepaired heart, but after four trips to Boston, and 2 open heart surgeries, he is thriving. Our son, Max, is 7 ½ and he has TOF/PA/MAPCAS. He was adopted from a Ukrainian orphanage when he was 21 months old. He has had 3 open heart surgeries, so far, and is doing amazing. Our youngest bio son, who was a completely unexpected blessing, was also born with 2 minor left sided heart defects. He is two years old now, and we see so much of Isaac in him. Part of the gift our son Isaac left us was the gift of seeing our deepest pain being transformed into some of our greatest joy….seeing beauty come from ashes. Isaac will always be our hero, our warrior, and our amazing gift. I will forever be so incredibly thankful and proud to be his Daddy.
I am running for Team Frannie in memory of my son, Isaac, and all of the other heart warriors who left this earth far too soon, as well as in honor of my other amazing heart warrior sons and all those who are fighting CHD every single day. We were blessed to have met Ethan and his amazing family during the nine months Isaac was in Boston, and we have had the privilege of staying in the Ethan Lindberg apartment on one of our many trips back to Boston. We are so incredibly proud of the amazing and life changing work that the Ethan Lindberg Foundation and Team Frannie are doing for the lives of heart warriors and their families. I am so honored to play just a tiny part in this incredible work.
ETHAN LINDBERG FOUNDATION INC wrote:
WE RUN FOR THEM.
That’s our motto. We are TEAM FRANNIE for the Ethan Lindberg Foundation and WE RUN to support children with congenital heart disease and their families.
We are honored to name our Marathon Team TEAM FRANNIE in memory of Frannie O'Brien who lost her battle to HypoplasticLeft Heart Syndrome shortly after birth in 2016. Frannie, and the many children we know and love, inspire us to run #HEARTSTRONG and make a difference. Our team is made up of amazing runners who each have a direct connection to children born with congenital heart disease (CHD). Each of them is running to honor their stories and to raise collective awareness about CHD and the impact it has on families.
Congenital heart disease is the #1 birth defect in the United States and the world. Each year approximately 40,000 children are born with a heart defect. Twenty five percent of these children need life-saving surgery in the first year of life.
Congenital heart disease is a life-long, family affair. Families often spend long periods of time in the hospital, they miss work and have to manage their home and other children while they are present to their sick child. When they leave the hospital there are medicines, doctor appointments and often their child faces developmental delays requiring targeted care. These experiences create mental and emotional challenges for the patient and family.
The Ethan Lindberg Foundation exists to fill in the gaps that families experience on this journey. Through practical support, research and joy we are changing the way we care for these families. We are proud to serve Heart Families in the following ways:
-Lease two apartments to provide long-term housing for families traveling to Boston Children's Hospital for cardiac care.
-Provide direct financial grants to families to offset the cost of travel and long-term hospital stays.
-Fund research focused on a treatment for diastolic dysfunction using stem cells.
-Fund research and programs to help doctors and parents make the best possible decisions together.
-Fund Music Therapy for children inpatient on the cardiac floor at Boston Children's Hospital.
-Created and host Restoring a Mother's Heart, a retreat for bereaved mothers whose children have died from chronic illness.
Thank you for partnering with us! Let's make a difference together!