Our Mission: Take an active role in medical advances that are committed to improving the quality of life for those fighting rare medical battles
Each year, Write With Light Project will host lemonade stands around the country, raising money to improve the lives of those struggling with rare conditions. In 2024, in honor of a spunky heart warrior named Sunley, profits will go toward the Fontan Go Clinic at Texas Children’s Hospital. This will provide specialty care for anyone who has had a Fontan procedure.
Sign up to host a lemonade stand here, or click the donate button below:
DONATIONS GO TO THE FONTAN GO CLINIC AT TEXAS CHILDREN’S HOSPITAL
we are leaving behind a brighter story.
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the blue baby revolution
What a fantastic problem to have — For the first time ever, single ventricle kids (previously known as “blue babies”) are living into adulthood more and more often. These children are born with half of a heart, which means that one of their pumping chambers is either too small or missing altogether. Typically, a single ventricle child will have 3 open heart surgeries called the Norwood, the Glenn, and finally the Fontan Procedure. While these surgeries are palliative and have varying degrees of success, more and more “Fontaners” are living into adulthood.
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quality of life
With this growing population of adults who have lived their whole lives with half of a heart comes a unique and very challenging set of medical issues. As the heart works much harder than a typical four-chamber heart, it puts pressure on other parts of the body — especially the liver. This can cause all sorts of health issues, and many are life-threatening. Doctors at Texas Children’s Hospital are working endlessly to improve not just the length of life, but the QUALITY of life.
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our chance to step up
Texas Children’s Hospital has opened a new program: the Fontan Go Clinic — an add-on model of healthcare for the Heart Center that treats exclusively patients who have undergone a Fontan procedure as a child. With enough funding, this initiative can grow, and start improving the quality of life for more and more adult Fontaners. Funding is desperately needed to move forward.
The video below tells a small piece of Sunley’s story. She is just one of many warriors who have survived a Fontan procedure, and now she will go through life with only one functioning ventricle in her heart. Sunley, and so many others living with half of a heart, will directly benefit from your support of the Fontan Go Clinic at Texas Children’s Hospital. You can follow along with Sunley’s journey and learn more about her diagnosis here.
Please share this video with your friends. Awareness is the first step toward action.