COTA for Brave Zack

Our Story

My Story

At first, I was going to tell a boring story with all my medical history and stuff like that. But I’m gonna tell the story of why I named this campaign “COTA for Brave Zack”.

I was diagnosed with Tetralogy of Fallot (a heart condition) when I was born, and I had open heart surgery at 4 months old. I barely ate any food when I was a baby. I was “Failure to Thrive” and so we spent about 20 days in the hospital trying to get me to eat. That was hard and I was underweight for a long time.

When I went to first grade, I struggled reading and I could not read like the other kids. My parents were like, “Not another struggle for this kid.” But they handled it really well and I got diagnosed with Dyslexia in second grade. I went to many specialists and many tutoring sessions. From second grade to seventh grade, it was my main struggle. I couldn’t read like the other kids and I struggled in school.

I was underweight compared to other kids, and I couldn’t keep up in all the activities because I had a heart condition. But I survived middle school and went onto high school, and my first year of high school was awful. I moved to a new school called New Vista – and it was awesome. I was starting to fit in and find my people – people who had dyslexia and medical problems all like me. And I joined an ultimate frisbee team. I never thought I would be able to play sports because of my heart condition, but I tried it and I loved it. Now I’m on two ultimate frisbee teams.

Throughout all these years, I went to a place called Roundup River Ranch, which is a Camp for kids with medical conditions. I go for heart week. After Covid, they started this tradition where they give each kid a rock at the end of the week that has their name and a word on it that describes their personality. For the past three years, I always got the rock with my name on it, and my word was always Brave. And for two years, I never understood why that was. I was like, “why would you give me a rock with Brave?” I never thought I was brave because I didn’t ask for any of this. I didn’t do it by choice. I just kind of survived it. So I didn’t think I deserved it because I wasn’t taking any risks. I was just trying to keep myself alive in my eyes.

This past spring we went to my normal heart appointment and everything was great until the doctor came in and said, “we found something near your stomach.” We went to another appointment and they said we have to biopsy this. So I had another surgery where the biopsy found out I had a condition called Abernethy Malformation (portal systemic shunt), and 2 masses on my liver. Then in April I found out I would need a liver transplant. I was angry. I hit stuff. I cried. I was confused. Because I was just getting my life back together. And now instead of trying to keep my grades up, this year I will be trying to keep myself alive. I have already gone through so much. I have had to grow up too fast, and I was just getting to be a kid again. And now I’m fighting to live.

So this year at Roundup camp when they gave me the Brave rock again, I looked at the rock and I didn’t argue. I just said, “I didn’t ask for this” – because I didn’t ask to be brave, I was forced to be brave. But nonetheless, I am the most brave, mature and loving teenager I know. And that is why I called this campaign “COTA for Brave Zack” because no one can argue that with all I have been through and didn’t ask for, I deserve the credit of being BRAVE.

This is a poem I wrote and shared with my whole school at an assembly.

A name 
I’m  
A boy who has all the steps to check into the children’s hospital memorized since when he was 3.
A boy who knows the process for surgery like the back of his hand.
A boy who has spent a good amount of his “childhood” in the hospital.
A boy who spends weeks at the hospital at a time.
A boy who takes at least 16 pills every day.
A boy who gets his blood drawn multiple times a week.
A boy who knows all the hospital’s secrets, tips and tricks.
A boy who knows how to tell if you’re going to get bad news or good news at a hospital.
A boy who think it’s normal to faint.
A boy who finds comfort in hearing nurses call “code blue”, watching them running down the hallway with a bed.
A boy who finds hospital beds nicer than his own. Even though a lot of times ropes and cords connect to his hands.
A boy who knows how to draw his own blood without help.
A boy who can’t imagine his life without his hospital.
A boy whose favorite food is in the hospital cafeteria.
A boy who doesn’t wait in the waiting room because they already have all his history memorized.
A boy who understands the kind of ostracizing and pain that comes from spending your free time at the doctors.
A boy who knows what it’s like when people ask “are you contagious?” 
A boy who has so many long names of conditions it would take 20 minutes to list them all. 
A boy who is scared to tell people the names of his conditions because he’s worried they will think he’s “faking it”.
A boy who knows exactly the way people look at you when you say “oh yeah I have had 14 surgeries”.
A boy who has scars from surgery galore.
A boy who knows it’s a miracle he’s standing here today but still wants to end his time here short.
A boy who has so much trauma from the hospital, he might as well die than live with it.
A boy who is so grateful for doctors, but also hates that they made little him feel like he was broken for needing all that medical attention.
Hi, I’m Hospital Boy. What’s your name?

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.