Matthew and Alisa Nelson reside in Burbank, California, with their wonderful children: Edee (13), Sammy (9), and Charlie (6). With two healthy kids, they were taken by surprise when they learned that their youngest, Charlie, would be born with a serious heart defect known as Hypoplastic Left Heart Syndrome, which involves having a single ventricle. As they began to process this news, Alisa, a registered nurse at Children’s Hospital of Los Angeles, understood the challenges that lay ahead for Charlie and their family.
Charlie was born on May 30, 2018, and has since undergone the three necessary open-heart surgeries associated with having a single ventricle. Unfortunately, the outcome of Charlie’s Fontan surgery didn’t meet the Nelsons’ expectations. Typically, children in similar situations start to show improved color and oxygen saturation levels in the 90s. However, Charlie continued to face difficulties, prompting Matthew and Alisa to seek further answers. Recently, during Charlie’s last cardiac catheterization, the interventions led to higher saturation levels and noticeable improvements in his color and energy.
Like many children and adults living with severe congenital heart disease, Charlie’s future remains uncertain. However, the Nelsons, like other families, have chosen to fight for Charlie and learn as much as they can to enhance his quality of life. Since Charlie’s birth, they have actively participated in the heart community, inspiring others to raise their voices and foster understanding that we are all in this together. They organized Charlie’s Champs Softball Tournament in 2024, uniting their community to raise significant funds for research while increasing awareness about the challenges faced by heart families. This year’s Charlie’s Champs Softball Tournament is scheduled for August.
For more details, please visit the event website: https://donate.heartworksinc.org/event/charlies-champs-softball-tournament/e647977
If you’re interested in sharing your story with HeartWorks for inclusion in our monthly newsletter, please reach out to erin@webuildhearts.org