Meet “Charlie the Champion,” Burbank’s five year old boy who has beat all odds with just half a heart. His family has started the Charlie’s Champs Charity Softball Tournament that will be taking place on February 3rd at George Izay Park to support HeartWorks in their mission to cure congenital heart defects.
Charlie Nelson was born with a condition called hypoplastic left heart syndrome (HLHS) which means that he was born with only half of a heart. Congenital heart defects (CHD) affect 40,000 children that are born each year but only 1,000 children in the U.S. are born with HLHS, and must undergo a string of surgeries and procedures all within their first three years of life. Children with HLHS must endure three open-heart surgeries to re-route the heart’s blood flow and construct the right ventricle to work as the main pumping chamber. While this doesn’t cure the patient, it does create a functioning heart.
“These last five years we have done everything we possibly could to help Charlie and his special heart work as well as it possibly can. He has been through three open heart surgeries, multiple cardiac catheterizations, countless hospital stays and other invasive procedures. And yet he still he isn’t where we hoped he would be at this stage,” said Alisa Nelson, Charlie’s mom. “Our hope now, both for his quality and length of life lies in the medical advances that HeartWorks is doing to find a cure and new innovative ways of helping kids like Charlie.”
The Nelson’s learned about Charlie’s diagnosis at Alisa’s 20 week anatomy scan and as a Newborn and Infant Critical Care Unit (NICCU) nurse at Children’s Hospital Los Angeles (CHLA), Alisa understood the severity of the matter. Her home hospital has been the location site for Charlie’s major surgeries and clinical trial using stem cells from umbilical cord blood.
This past June Charlie turned five, a monumental milestone for Charlie and the Nelson family as the five year survival rate for patients with HLHS is 58-72%. “His heart could fail tomorrow or could last until he’s 30-40; we just try to focus on the positive and enjoy the time we have with him while he’s here,” said Alisa in a CHLA article. “I made a conscious choice that I’m not going to live in fear anymore, I’m going to live in love. However long we get to have with him, we are happy.”
To continue to support Charlie and the research HeartWorks does to cure congenital heart defects, the Nelsons are excited to put together the upcoming softball tournament here in Burbank on February 3rd. Teams can register for the tournament at a rate of $400 a team which includes 12 complimentary tournament shirts and each team is guaranteed to play three games. The divisions include Competitive, Rec, and COED, and all tournament games will follow Burbank Parks and Recreation Department’s adult sports men’s or COED slow-pitch softball league rules and regulations.
The tournament will take place at George Izay Park (Olive Park) at 1111 W. Olive Ave. in Burbank on Saturday, February 3rd, 2024 starting at 8:00am and food trucks will be on site during the day. Registration closes on January 27th. To register your team, click here! By joining the tournament you are not only paving the way for Charlie for the 40,000 babies born every year with a CHD.
Charlie’s dad, Matthew Nelson, has been playing softball through Burbank Parks and Rec for the past 15 years and started a men’s team called The MAGIK (Making Aches Go away In Kids) Pain team, coincidentally named after a CHLA pain management team. Matthew has also coached their daughter Edee’s softball team for the last seven years and coaches their other son, Samuel’s baseball team. As a huge Red Sox fan, Matthew along with his wife Alisa, are excited to start this tournament in honor of Charlie and share his love of softball and baseball with the Burbank community.
The Nelson’s have raised $1,800 for their fundraiser so far but have a goal of $10,000. If you would like to donate to their HeartWorks campaign instead of signing up as a team, you can donate here, and there are also sponsorship opportunities available on their site here. HeartWorks works independently and collaboratively to develop therapies that use a person’s cells to enhance their existing heart muscle or grow new bathing heart muscles. To learn more about HeartWorks click here.
