Noah Bella Michaelis was born with complex congenital heart defects and Heterotaxy Syndrome. She survived four open heart surgeries by the age of five, multiple cardiac catheterization procedures, and was hospitalized many times throughout her life. Yet, during all of her challenges, she focused on helping other heart families by raising money through her “Noah’s Festival of Life” event and her lemonade stands. Since 2010, she’s raised over $100,000 for the Hopeful Hearts Foundation and has helped several families throughout the U.S. Her efforts have awarded her the title of Junior Ambassador for the Hopeful Hearts Foundation. She’s received recognition by the City of Los Angeles and by the Los Angeles City Fire Department for her advocacy efforts.
It all started after we threw a backyard party to celebrate the recovery of Noah’s 4th heart surgery. She wished nothing more than to celebrate her homecoming with a carnival-like festival in her backyard full of games and cotton candy among all her friends and family. It was a day for all of us to celebrate life together and to be thankful for the countless support from all of our friends and family. We called this celebration “Noah’s Festival of Life.”
The following year, we wanted to have another celebration but Noah asked if we could give back to other heart kids. She remembered how she received a gift bag on Valentine’s Day from the Hopeful Heats Foundation, while hospitalized after her 4th surgery, at the age of five. She felt so special to receive this from someone she didn’t know and, as parents, we were amazed how a care package could take us away from what we were up against. Noah wanted other heart kids to feel this love and support.
Since then, we have expanded Noah's Festival of Life into a fundraising effort that includes a silent auction and raffle aimed to help heart families with some financial assistance and to provide comfort in this of hardship. The funds raised went towards covering the costs insurance could not such as, hotel accommodation, airline tickets, food, parking fees, bills, etc. Between festivals, Noah raised money through her lemonade stands.
In 2015, Noah made it her goal to try and make a larger impact on the CHD community. She joined with advocates across the country and spoke to legislators on Capitol Hill about CHD and how crucial it is to get their support for research and prevention. She spoke with CA congressman, Brad Sherman, and representatives for both Senator Diane Feinstein and former Senator Barbara Boxer on behalf of the Pediatric Congenital Heart Association to help push for the eventual passing of $10.0 million in FY2016. The combined outreach by all the advocates helped secure the budget for the Center for Disease Control and National Institute of Health, in support of surveillance and public health research to build upon current activities and to better understand the public health impact of congenital heart disease across the lifespan.
In the fall of 2016, we hosted a record number of guests to our 5th Noah’s Festival of Life. She made a very special announcement and shared with everyone the news we were expecting our second child, a baby brother, in the spring. Following our most successful event, Noah’s health rapidly declined and we struggled to find the answers for what was happening to her. We learned she was succumbing to a very rare life threatening condition, known as Plastic Bronchitis, which stemmed from her single ventricle CHD. Our only choice for treatment was at Children’s Hospital of Philadelphia with the two leading physicians in the field. But after a successful surgery to combat the Plastic Bronchitis, she suffered greatly with complications during her recovery. Noah passed away on January 3, 2017.
But our story continues as we set out to carry on Noah’s work and her message. We know she was sent here to teach us. To inspire us. To make us better humans. We follow the examples she left us and carry her torch so it may continue to shine bright.
FACTS ABOUT nOAH
Noah was a voracious reader. Her favorite books to read were mystery/adventure stories like the classic Nancy Drew and Hardy Boys, to Mary Pope Osborne’s The Magic Treehouse series. Sherlock Holmes is a known favorite. Wildwood and Mr. Lemoncello’s Library were also top favs. Her love for stories propelled her to become an amazing writer of adventurous short stories. Noah loved board games as well so if she wasn’t reading she was playing Settlers of Katan, Machi Koro, or Star Wars Monopoly with us and our friends. Playing Minecraft was a favorite with her cousins along with video games from Broken Age to Dragon Age with her dad—and she was always up to challenge someone in a good game of chess! Noah also loved learning everything she could about animals and was amazed by the diversity of species out there. She loved the Wild Kratts and was inspired by Chris and Martin Kratt. Her dream was to one day become an animal rescuer and conservationist.
WHAT AN ICE COLD CUP OF LEMONADE CAN DO.
It’s a thirst quencher for the soul.
Selling homemade lemonade on your street corner has been long since a pastime. Kids make it and sell it to earn a few bucks so they can buy perhaps a new toy or even raise enough to go to Disneyland.
But selling lemonade has taken on a whole new meaning for Noah, who at the age of 6 wanted to sell lemonade and give her earnings to an organization that helps other heart families in need. This wasn’t something we, as her parents, told her she should do as a nice gesture, but something she thought of in her own right, where even today Noah’s passion for helping other heart kids and their families is stronger than ever.
It started with Noah’s Festival of Life, an event celebrating and honoring Noah and all heart kids and their families affected by CHD. She wanted to have her own booth to help raise money for the Hopeful Hearts Foundation, and asked if she could serve lemonade, free to all the guests. Noah put out a tip jar raising over $100 and donated every penny to Hopeful Hearts. From there, her drive to help others grew and today Noah continues to sell her lemonade to help other heart kids. The community support has been tremendous, most notably with the LA City Fire Department and LAPD. We can not thank our community enough for their unwavering support.
Proceeds from Noah’s Lemonade Stand go directly to creating gift care packages for children in the CTICU.
On December 4, 2014,
Noah was invited to speak in front of the entire Los Angeles City Council about Congenital Heart Disease awareness. She was also being honored by Councilman Blumenfield for her commitment to her cause and bringing her community together with her lemonade stand all while raising awareness for CHD.
“When I woke up today, I had no idea the degree to which I would be inspired by the story of 11 year-old Noah Michaelis.
I brought Noah to Council to honor her incredible work fighting congenital heart disease (CHD), and more importantly her remarkable spirit and strength. I will never forget how silent the normally raucous Council Chambers got when she stood at the microphone to share her story.
Born with CHD, Noah has dedicated herself to helping others by raising awareness and funding for CHD. Since 2009, Noah has hosted Noah’s Festival of Life, which she began after undergoing 3 open heart surgeries in just one year. This year, Noah’s Festival of Life raised an incredible $34,000 for the Hopeful Hearts Foundation.
CHD is a condition that is responsible for more deaths in the first year of life than any other birth defect, affecting roughly 1 in 100 infants born in the United States.
This morning, Noah thanked the Council for the recognition, but it is we who were inspired by Noah and her incredible story.
ON February 25, 2015,
Noah joined advocates from all around the country to learn about the importance of CHD advocacy and to meet with her legislatures regarding federal funding for research, data collection, and transparency across the board for Congenital Heart Disease.