“Only twenty percent of babies born with this heart condition live to the age of one year, and most will die by age four” was the quote from the internet that made it all real in 2018. This was actually happening.

Every wall I had built for my life came crashing down in that few seconds. I was 24 weeks pregnant with my third child, Sunley, and had already been through an excruciating month of misdiagnoses that seemed to grow worse and worse with each ultrasound. Finally, we had landed on the correct diagnosis: A severe and rare version of Hypoplastic Right Heart Syndrome. In basic terms, Sunley’s heart was deformed and she would have to live her likely short life with only half of a heart.

The entire right side of her heart was missing; it simply never formed. Every time I researched on the internet or in books, the reality of our new situation was revealed to be worse and worse. It was possible that Sunley would die in infancy, and if she didn’t die, she would perhaps only live to age 5 or less. And if she did somehow make it to adulthood, it was likely that she would experience a wide range of health problems, including liver cirrhosis or heart failure. Our family felt doomed to break. I didn’t even know where to start with my prayers, except to pour out everything.

It’s now five years later, and Sunley has lived. And our lives have changed. She is now five years old, and has survived three open heart surgeries, two procedures via heart catheterizations, months on oxygen support, and ten or so hospitalizations. Sunley also plays T-Ball, fights in Jiu Jitsu classes, attends Pre-K, and is the most fiercely independent five year old you will ever meet. She is obsessed with the color yellow, and with lemonade.

Our lives are different than they once were, and I wouldn’t change it for anything. The secret joy that comes alongside medical parenting is deeper than I ever could have had without suffering. Scripture breathes life into my motherhood, equipping me for the daily unknowns of Sunley’s life, and the unknowns of the effects of separation and trauma in the lives of all four of my children.

It is true that I have felt completely emptied, time and time again. Trying to parent and homeschool four children in the midst of medical emergencies, trying to nurture my marriage, trying to find time to spend alone with Jesus — this is sometimes an impossible balance. But He is present consistently.

The third open heart surgery that Sunley had was called a Fontan procedure, and nearly all children with half a heart have this operation. When it works properly, it greatly improves oxygenation of the blood, but unfortunately it tends to cause many other health issues. It is a palliative surgery, which means that it doesn’t cure anything; It simply improves quality of life. And there’s no timeline with it — It lasts as long as it lasts. For some people, it fails quickly, but for others it has lasted for thirty years and counting.

In the five years Sunley has been alive, medicine has come a LONG way, and now her chances for surviving and THRIVING in her adulthood with her Fontan are increasing exponentially each year. More and more “Fontaners” (people who have had a Fontan procedure) are surviving into adulthood, going to college, getting married, traveling, and living life as if nothing is missing. So overall, her prognosis has unofficially improved. However, the longer Sunley lives with her unique circulation, the more likely it is to cause serious health issues. She already suffers from chronic limb pain. Liver issues like cirrhosis are very likely for her future. It is possible that she could eventually need a heart transplant (which has a whole host of its own problems), or a heart and liver transplant. The list of things that could go wrong is lengthy, and I won’t attempt to name them all.

Or, maybe there will be giant medical advances in the next decade that could drastically improve her future.

The main issue facing those like Sunley who make it to adulthood is that doctors have little information about how to treat adult Fontaners. These surgeries that are used to treat half-hearted defects are only about 30-40 years old, which means that very little (and I mean VERY little) data exists on proper treatment. But because of this growing population of adult heart patients, there is a new need in the medical community: doctors who have a sub-specialty in Fontan care. There are now a few hospitals opening their own clinics to care for these patients, including Sunley’s hospital, Texas Children’s Hospital in Houston. They have consistently been ranked number one in the nation for pediatric cardiology and congenital heart surgery, and thanks to our fundraiser last year, and funding from another donor, Texas Children’s has officially opened the Fontan Go program, and have about 40 patients enrolled already. This clinic focuses on specialized care for the Fontan patient, from childhood through adulthood, and Sunley will be enrolling soon. Before this program existed, these kids would see their cardiologist for periodical check-ups. But now, they will see their cardiologist, a liver doctor, an exercise therapist, a nutritionist, a psychologist, and any other specialty needed for that unique patient — and all of those specialists will be familiar with Fontan circulation! The Fontan Go program is also collecting and sharing data, looking for patterns or inconsistencies that could help guide the plans for Fontan care. This is what I’m most excited about, because there is no telling where that could lead. Their goal is to be able to intercept the more major complications that come with a Fontan circulation before it causes permanent damage.

This is where you come in.

We need you to host a lemonade stand! We have started a nonprofit called Write With Light Project to raise money for the Fontan Go program at Texas Children’s. We gather people around the country willing to host a lemonade stand on any August day of their choosing, send them a box of supplies they need to make their stands successful, and then we pool all of that money together and send it to the Fontan Go program. Last year was our first year. We had 32 lemonade stands in 13 states around the country, and together we raised over $32,000!

The commitment from participants is minimal: You simply have to sign up on our website and pick any day in August that works for you. Kids love getting involved, and a lemonade stand is a fun family summer activity. In July, you’ll receive a box of goodies and marketing materials to help your stand be successful. No amount raised is too small. Our stands last year raised amounts ranging from $20-$7,000 and every single one of those stands brought our family encouragement.

This is a direct way you can help not just Sunley, but so many kids like her.

Medicine is changing, and as a mother it feels so good that doctors see my child for the whole person that she is. Thank you for your prayers and for your help. There is nothing easy about raising a child with an incurable illness, but Christians around the world have carried us with prayer and encouragement. You can sign up to host a lemonade stand, donate, or learn more about Sunley’s journey here.