scars are a map of your heart's adventures - anne lamott
meet levi
Levi is an amazing 9 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.
what levi is up to now...
visit Give Kids the World
We plan to head back to Florida in January every year to volunteer at Give Kids the World Village in a full circle moment
heading back to florida
During our trip to Florida Levi will get to hang out at the village for two whole days for his special alumni trip.
helping others
Levi will once again have his lemonade stand in the spring to help raise money for the Mother's Day Make-A-Wish Truck Convoy Fundraiser!
levi's lemonade
levi is currently raising funds for Make-A-Wish Philadelphia, Delaware & Susquehanna Valley's Mother's Day Truck Convoy fundraiser
the
make-A-Wish dream come true
Levi has a big, loving family cheering him on every step of the way. He has a twin brother named Luke and three amazing sisters—Mackenzie, Elora, and Reese—who are all part of his team through every adventure.
Levi's Make-A-Wish trip was extra special because it was his very first time flying and his first time ever visiting Florida! At Give Kids The World Village, Levi loved the "Christmas" Party, getting tucked in, and, best of all, being able to swim in the "winter." Thanks to their generosity he was also able to go to Universal to meet his favorite Transformers, see alligators at Gatorland, plus tons more. It was a trip packed with fun and surprises, and Levi made the most of every magical moment.
all the fun we had
Just a glimpse into the magical time we had on Levi's Make-A-Wish Trip in 2025
heart surgery #1
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.
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.
heart surgery #2
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.
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.
Heart surgery #3
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.
1 year post Fontan surgery Levi had another heart cath to check on the stability of his new circulation.
heart cath #3
for the nerds...
Complete Unbalanced AVSD
A complete unbalanced atrioventricular septal defect (AVSD) is a congenital heart defect where there is a large hole in the center of the heart and one shared valve instead of two. Because the valve is unbalanced, most of the blood flows into one ventricle, causing the other ventricle to remain underdeveloped causing Hypoplastic Left Heart Syndrome or HLHS for short. This makes the heart unable to function as a normal two-ventricle heart.
the norwood
The Norwood surgery is the first of three open-heart surgeries used to treat certain complex congenital heart defects. It is typically performed in the first weeks of life and reconstructs the heart and blood vessels so the heart can pump blood to the body using a single ventricle.
The Glenn
The Glenn procedure connects the veins from the upper body directly to the pulmonary arteries. This improves oxygen levels and helps the heart work more efficiently as part of staged surgical care.
the fontan
The Fontan procedure connects blood flow from the lower body to the pulmonary arteries without passing through the heart. This completes the single-ventricle circulation system.
Prognosis
the future
Levi’s heart condition does not remain static as he grows. Children living with single-ventricle circulation often face progressive complications over time, including declining heart function, abnormal heart rhythms, exercise intolerance, and increasing strain on other organs. The Fontan circulation places chronic pressure on the liver, making Fontan-associated liver disease and cirrhosis a real and expected risk. Issues with the lungs, protein loss, clotting disorders, and the possibility of future surgeries or transplant evaluations are part of the long road ahead. This is not a matter of if complications arise, but when and how severely.
And still, this story is not one of despair. Our hope has never rested in outcomes, timelines, or statistics. It rests in Jesus, who is present with Levi in every moment, in the hospital rooms, in the waiting, in the joy, and in the grief. We trust that God is not distant from suffering, but intimately near to it, holding Levi even more closely than we ever could. We do not believe Levi’s life is small because it may be shorter, nor less meaningful because it is harder. His life bears weight, purpose, and eternal significance. We walk this path knowing that whatever the future holds, whether long or painfully brief, Levi is known, loved, and kept by a Savior who has already overcome death itself.
"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