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

—Anne Lamott

I'm on my make-a-wish trip and

My name is Levi

Levi is an amazing soon-to-be 8 year old (on January 30th) 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's most excited to order pizza to his room, go to the arcade, and enjoy plenty of ice cream for breakfast!

A person sits in a hospital room wearing a black top while holding what appears to be blankets or linens.
Toddler in blue outfit sits on red and blue star-patterned exercise mat during playtime.
Medical pulse oximeter device showing digital readings of 80 and 126 with green indicator lights on white surface.
A baby wearing a blue shirt with animal print patterns receiving a kiss at what appears to be a medical office.
A medical professional helps position a baby on blue star-patterned therapy equipment during treatment at a clinic.
Medical monitoring of an infant patient with electrodes and sensors attached while receiving care in a clinical setting.
Baby sleeping peacefully with a green pacifier and small stuffed bear toy under a soft gray blanket.
A small child sits in a hospital bed with a plate of food and medical monitoring equipment visible in the background.
A joyful infant smiles while sitting at a table with a wooden educational wall panel featuring sea creatures in the background.
A man in a striped button-down shirt holds a small toddler with a pacifier near a window in what appears to be a clinic.
Happy toddler in gray pants stands next to a heart-decorated cake with red balloons floating in a white studio setting.
Red heart-shaped balloons float against a white background with a small figure sitting beneath them.
Red and white anniversary cake with a heart design and lattice decoration sits inside a cardboard box.
Two children sitting on the floor doing coloring activities during a cardiology appointment with medical text overlay.
Medical office hallway with toys scattered on floor and someone helping a child with a yellow ride-on car toy.
Child in khaki pants and white shirt posing outdoors near a pond with willow trees.
Sleeping child in colorful dinosaur print bedding with a purple and green blanket.
Young patient sitting on bench outside hospital wearing bright patterned hospital gown.
Someone curled up on medical exam chair with white sanitary paper covering, wearing camo pants and casual attire.
Small infant in hospital bed with medical tubes and monitoring devices attached in clinical setting.
A patient wearing a green shirt rests on a hospital pillow with medical tubing visible.
A young child sits in a hospital chair holding a blue stuffed toy.
Medical vital signs monitor displaying numerical measurements and readings in a hospital setting.
A toddler in a floral shirt holds a large brown teddy bear while being held by someone wearing a black face mask.
A small child in a blue hoodie sits in a medical waiting room chair.
Young patient with monitoring electrodes in medical setting.
Two children in a medical examination room, one sitting on an exam table while the other shows a handheld device.
A child rests in a hospital bed wearing blue pajamas with teddy bears while connected to medical monitoring equipment.
Two young children standing together against black background.
A small hand with Union Jack nail art wearing medical gauze and laying on colorful striped fabric.
Two infants lying together on white bedding, one wearing an orange striped outfit and one in green plaid.
Patient sleeping peacefully in hospital bed wearing teal patterned medical gown.
A newborn in intensive care with multiple medical tubes and monitoring devices attached.
A toddler in a gray and blue shirt explores a colorful wall-mounted activity panel in a playroom.
Child in green shirt sits in blue chair with colorful dinosaur balloon visible in background at medical facility.
Patient resting in hospital bed covered with colorful blanket while being monitored.
Walking down hospital hallway with medical staff and equipment visible.
Smiling child buried up to their shoulders in beach sand during a fun summer day at the beach.
Patient resting in hospital bed with yellow and blue comfort items.
Side profile of young boy in white shirt and khaki pants outdoors.
Two newborn babies lying side by side in a hospital bassinet with blue 'BABY' signs.
A bedbound child rests with a plush brown teddy bear companion amid medical equipment and colorful bedding.
Patient in green shirt sleeping next to hospital meal tray with rice and vegetables.
Two children wearing matching patterned face masks sit close together in front of a beige wall.
A patient sits at a hospital bedside table with a toy giraffe and food items.
A child in red and black buffalo plaid pajamas with a bear patch sits among toys on the floor.
A black and white photo of a small child sitting on steps with a plush owl toy.
Parent with infant in hospital room with medical equipment.
Close-up photo showing skin with visible scars and a navy blue patterned fabric.
A newborn infant in hospital care with monitoring equipment and tubes.
Black and white portrait of baby sitting on dark fabric.
A sleeping infant with medical tubes and monitors in an intensive care unit.
Young patient resting in hospital bed with monitoring devices and a colorful blanket.
Medical equipment and tubes surround a patient in a hospital bed.
A young patient wearing a baseball cap sits at a table in what appears to be a medical setting.
A young patient resting in a hospital bed holds a toy tractor while wearing a yellow blanket and looking cheerful.
A baby sitting in a metal tub with apples on a grassy lawn with a dog in the background.
Young child wearing a gray shirt and mask plays with a colorful activity board toy mounted on a wall.
A young child in a white vest looks down at the camera with a cheerful expression, with a ceiling fan visible in the background.
A smiling baby wearing a peach-colored onesie lies on patterned bedding with medical monitoring equipment visible.
Patient in hospital bed holding green toy while receiving medical treatment.
A sleeping patient rests peacefully on hospital bedding with medical equipment in view.
A group stands together at a nighttime outdoor event with yellow flowers and market tents visible in the background.
Young patient in hospital gown with dog print pattern smiles while holding green toy dragon in hospital bed.
Patient in green shirt receiving medical care with oxygen tube and monitoring equipment.
Large green dinosaur balloon floating above hospital bed in medical room.
Three young children relaxing together on a floral patterned bedspread.
Two people sit in recliners at what appears to be a hospital or medical facility.
A young patient resting with medical monitoring equipment attached and a bandage on their head.
A close-up of a hand holding another hand with medical equipment and IV lines attached.
Hospital scene showing care for an infant patient surrounded by medical equipment in a brightly lit room.
Medical ultrasound monitor displaying cardiac imaging exam with control panel and screen showing heart diagnostics.
A patient rests in a hospital bed with medical monitoring equipment and breathing assistance.
A patient in a hospital room plays with bubbles near an orange cat-shaped light or toy.
Occupational therapy session with child on swing platform over padded red mat and colorful exercise equipment in background.
A visitor stands beside a hospital crib containing medical equipment and monitors.
Patient in hospital bed holding a drink cup while wearing medical gown and IV tubes.
Close-up of person touching pregnant woman's belly in blue dress outdoors.
Two youth baseball players in gray uniforms with NL caps stand together on a grass field showing off their baseball gloves.
A small child sits in a wheelchair in a hospital hallway with a green backpack.
A hospital room with colorful walls features a bed with medical equipment and patterned wallpaper in the background.
Medical care being administered to a young patient in a hospital setting.
Two children standing in front of a large monster truck with huge blue-rimmed tires on a muddy ground at an outdoor event.
Patient resting in hospital bed with medical monitoring equipment attached.
A smiling child in a blue shirt shows off a scar or marking on their torso.
Patient sleeping with stuffed bear while connected to breathing apparatus in hospital bed.
A small baby in hospital clothing drinks from a bottle while wearing a nasal cannula.
A young patient rests in a hospital bed while receiving medical care.
Patient sleeping peacefully in hospital bed wearing blue patterned gown.
A hospital bed in a medical facility with monitoring equipment and IV lines attached.
Wooden pier stretches over calm waters at sunset with boats visible in the harbor.
A young swimmer in blue tie-dye swim trunks stands in murky water with a happy expression.
Two newborn babies lying side by side in hospital bassinet with blue 'BABY' signs and medical equipment visible.
Young student focused on completing workbook exercises at wooden table in home kitchen setting.
Tender outdoor portrait in soft natural lighting with loving embrace.
A sleeping infant wearing a white onesie rests peacefully with an oxygen tube under their nose.
A patient sleeps peacefully with an oxygen mask and monitoring equipment in a hospital bed.
A large red monster truck called Blood Show is parked on grass with spectators standing in front of it at a show.
Young patient in hospital gown looking at green toy dinosaur puppet while resting in medical bed.
Child in hospital bed holding stuffed giraffe toy with medical equipment nearby.
A medical setting with staff wearing protective gear including face masks and surgical caps.
Medical staff attending to patient in hospital bed during treatment.
Patient resting on medical examination table during hospital visit.
Patient resting in hospital bed with white sheets and medical equipment nearby.
A resting leopard lies in hay next to a stone wall on exhibit at a zoo.
Two individuals wearing face masks pulled down to their chins share a joyful moment together in an indoor setting.
A laughing toddler standing next to a framed picture against a white wall.
A touching moment in a hospital room as toy tractors are played with while resting in bed under colorful blankets.
Young patient wearing medical monitoring sensors on bare chest looking down while sitting on bed.
A group of young diners enjoys drinks and studies menus at a casual restaurant booth with large windows.
Young baseball player smiling and wearing a raglan t-shirt stands outside a brick building with a medal around their neck.
Game console, controllers, toys and electronics scattered on a blue table surface at a play area.
A young patient sits on a medical examination table in a doctor's office with gray curtains and storage bins in background.
A sleeping child wearing nasal oxygen tubes rests on a hospital pillow while cuddling a plush toy in a yellow hoodie.
A sleeping child in a hospital bed covered with a purple and blue blanket alongside a green plush toy.
Patient playing with colorful building blocks while standing near hospital bed.
Two children wearing red shirts and protective face masks sit together in medical waiting room chairs.
A small child being given oral medicine from a syringe by an adult's hand against a blue background.
Medical monitor displaying vital signs and patient data in hospital setting.
Medical ultrasound examination being performed in hospital room with equipment visible.
1 / 120

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.

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.

This Make-A-Wish trip is extra special for Levi because it’ll be his very first time flying and his first time ever visiting Florida! At Give Kids The World Village, Levi cannot wait for the "Christmas" Party, getting tucked in, and, best of all, having "pool parties every night." Thanks to their generosity he will also be able to go to Universal to meet his favorite Transformers, see alligators at Gatorland, plus tons more. After extensive research (thanks Handyman Hal) his twin brother Luke and him also have made plans to check out Ridemakerz in Orlando and make their very own RC cars for their birthday. It’s going to be a trip packed with fun and surprises, and Levi is ready to make the most of every magical moment.

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.

This Make-A-Wish trip is extra special for Levi because it’ll be his very first time flying and his first time ever visiting Florida! At Give Kids The World Village, Levi cannot wait for the "Christmas" Party, getting tucked in, and, best of all, having "pool parties every night." Thanks to their generosity he will also be able to go to Universal to meet his favorite Transformers, see alligators at Gatorland, plus tons more. After extensive research (thanks Handyman Hal) his twin brother Luke and him also have made plans to check out Ridemakerz in Orlando and make their very own RC cars for their birthday. It’s going to be a trip packed with fun and surprises, and Levi is ready to make the most of every magical moment.

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

A baby in hospital with medical tubes and monitoring equipment attached, resting on white sheets.

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

A small child in a floral outfit hugs a large brown teddy bear while being held against a blue backdrop.

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

A young patient rests in a hospital bed wearing blue pajamas with cartoon animals while connected to medical monitoring devices.

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 resulted 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 3,800 have hlhs

Children with HLHS 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...

Living with Hypoplastic Left Heart Syndrome (HLHS) is a profound journey marked by significant medical complexity and the need for continuous care. HLHS involves a severe underdevelopment of the left side of the heart, rendering it incapable of pumping blood effectively to the body. This condition requires a series of three staged surgeries known as the Norwood, Glenn, and Fontan procedures to reroute blood flow, which are critical for survival. Historically, without these interventions, HLHS was almost uniformly fatal within days or weeks after birth. Even with modern surgical techniques, survival remains a challenge; it's estimated about 70% of children reach 5 years of age. With medical advancement these numbers continue to improve and if able to reach age 5 it is estimated that 90% of them will reach 18. However, the surgeries have not been around long enough to have long term studies. We estimate that only about 30% of patients, make it to 30 years without a transplant. Long-term, those who survive face ongoing health issues, including potential heart failure, arrhythmias, and neurodevelopmental delays. The Fontan circulation itself will cause liver fibrosis over time, and eventually may progress to cirrhosis . These statistics underscore why HLHS is considered a critical illness, where every year of life gained is a testament to medical advancement and resilience.


The challenges do not end with childhood. Even those who successfully navigate through the surgical gauntlet must manage a lifetime of medical appointments, medications, and potential complications like liver problems due to Fontan circulation. The quality of life can be good for some, but for others, it involves frequent hospital visits and a constant awareness of their health's fragility. Despite these hurdles, the life expectancy for those with HLHS has improved, with some individuals now living into their 30s or beyond, though this is still a minority, highlighting the severity of the condition.


In honoring all the heart warriors we've known but lost, we acknowledge the silent battles they fought and the indelible marks they left on our hearts. Each child that's been lost to congenital heart disease reminds us of the preciousness of life and the strength found in adversity. We thank God for the ability to be able to find something good in every situation, understanding that even through loss, there's a lesson of love, resilience, and the sacredness of each moment we share with our son. 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.


"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