"Scars are a map of your heart's adventures."
—Anne Lamott

I had my make-a-wish trip and
My name is Levi
Levi is an amazing 8 year old living with Hypoplastic Left Heart Syndrome (HLHS), a rare heart condition he's been battling since birth. Levi has a big love for monster trucks, Transformers, and the color orange, and he’s thrilled to have chosen to go to Give Kids the World Village for his Make-A-Wish. He was most excited to order pizza to his room, go to the arcade, and enjoy plenty of ice cream for breakfast!
Thank you for being a part of Levi's Zipper Club Crew:
Hi there! By taking the time to read this, you’ve officially joined Levi’s Zipper Club Crew—a group of people who carry a little piece of his story in their hearts.
The term "Zipper Club" is a term of endearment used within the heart surgery community to refer to people who have undergone open-heart surgery, particularly those who have a scar that resembles a zipper down their chest. It’s called the Zipper Club because, much like a zipper, the scar marks the opening and closure of the chest during surgery.
Thank you for being here, for cheering him on, and for joining Levi’s Zipper Club Crew. Your kindness and support make this unforgettable chapter in his life even more special.
All the fun we had...
Video by 400 Home Videos
Operations & Procedures...
1st Heart Surgery

1st Heart Surgery
Levi's first open heart surgery was at one week old. It is called the Norwood and is the first of a 3 stage process to redirect the blood flow to his heart.
February 2017
Heart Cath #1

Heart Cath #1
Levi's 1st heart cath was at 3 months old. He had a pulmonary hypertensive crisis during the cath and remained intubated for a week.
April 2017
2nd Heart Surgery

2nd Heart Surgery
His second surgery was when he was 3.5 months old. In the first 4 months of Levi's life he spent 3 of those months in the hospital with complications. After receiving his Glenn heart surgery he was able to finally go home.
May 2017
Heart Cath # 2

Heart Cath # 2
As part of preparing for his third open heart surgery he had a heart cath to make sure everything was looking good for surgery.
April 2021
3rd Heart Surgery

3rd Heart Surgery
Levi received his third heart surgery, the Fontan, at the age of 4. His blood vessels have now been "rearranged" to provide blood to his lungs while bypassing his heart so that his heart can pump blood to his body with one working ventricle.
June 2021
Heart Cath #3

Heart Cath #3
1 year post Fontan surgery Levi had another heart cath to check on the stability of his new circulation.
June 2022
For the Nerds...

Complete Unbalanced AVSD
Normal Heart
Levi's technical diagnosis is a complete unbalanced Atrioventricular Septal Defect, which results in Hypoplastic Left Heart Syndrome. Here is a picture of a normal heart, followed by one with unbalanced AVSD.

What's it Mean...
Unbalanced AVSD heart
An unbalanced complete AVSD is a heart defect with a large hole between all four chambers and abnormal valves. Blood flows unevenly because one side of the heart is smaller, causing blood to mix and straining the heart.

The Norwood Surgery
1st surgery
The Norwood surgery is the first of three surgeries for babies with heart defects like HLHS. It creates a new pathway so the heart can pump blood to the body, even with only one working side.

The Glenn Surgery
2nd surgery
The Glenn surgery is the second of three surgeries for children with single-ventricle heart defects. It redirects blood from the upper body directly to the lungs, reducing the heart’s workload and helping improve oxygen levels in the blood.

The Fontan
3rd surgery
The Fontan surgery is the 3rd surgery for children with single-ventricle heart defects. It connects blood from the lower body directly to the lungs, allowing oxygen-poor blood to bypass the heart entirely, which helps improve circulation and oxygen levels.

Prognosis
1 in 15,000 have avsd like this
Children with Levi's heart condition can live into adulthood with proper treatment, but life expectancy varies depending on the severity and ongoing care. Lifelong monitoring is often needed due to long-term health challenges.
Living with HLHS...
Levi's Unbalanced AVSD resulted in Hypoplastic Left Heart Syndrome (HLHS) is a severe and life-limiting congenital heart defect where the left side of the heart is critically underdeveloped, preventing it from functioning properly. Without surgical intervention, this condition was once universally fatal within days of birth. Today, survival is possible through a series of three complex surgeries—the Norwood, Glenn, and Fontan—performed in infancy and early childhood to reroute blood flow and compensate for the heart's limitations.
While many children with HLHS experience periods of stability and lead fulfilling lives, it remains a lifelong critical illness. The surgeries do not cure HLHS but are considered palliative, meaning they manage the condition rather than fix it. Survivors face significant risks, including heart failure, arrhythmias, neurodevelopmental challenges, and complications from the Fontan circulation. One of the most serious long-term risks is liver disease, which can progress to cirrhosis and further complicate their health.
Life expectancy for those with HLHS remains uncertain due to the relative newness of surgical interventions. Some of the oldest survivors of the earliest surgeries are in their 30s, but many have not reached this milestone. Advancements in care offer hope, but the reality is that HLHS is a life-limiting condition with no definitive cure and an uncertain future. These medical complexities and the need for lifelong monitoring and care underscore why HLHS qualifies as a critical illness, making children with this condition eligible for Make-A-Wish.
Make-A-Wish offers an opportunity to create joy and lasting memories for families navigating the uncertainties of life with HLHS. For parents and loved ones, every milestone is a triumph, and every moment together is a gift. We are profoundly grateful for this time, making amazing memories, and cherishing every heartbeat, knowing how fortunate we are to witness such courage and joy amidst the challenges.
In memory of our heart warrior buddies we've lost, Madelyn and Blaine (Levi's 2nd cousin), we acknowledge the battles they fought and the indelible marks they left on our hearts. Each child that's been lost with congenital heart disease reminds us of the preciousness of life and the strength found in adversity. We thank God for the ability to have been able to know them, understanding that even through loss, there's a lesson of love, resilience, and the sacredness of each moment.
"Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day. For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory, while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal."
2 Corinthians 4:16-18