Today we’d like to introduce you to Trey Flynn.
Hi Trey, thanks for sharing your story with us. To start, maybe you can tell our readers some of your backstory.
We knew Congenital Heart Disease existed on June 5, 2011, but knowing something exists doesn’t necessarily mean you know what it is. The next day, congenital heart disease became a part of our lives when our 20 weeks ultrasound was dampened by the discovery of a very complex CHD in our son.
When Holden entered this world on October 11, 2011, My wife (Nicole) and I were ready for a long fight. Those chaotic first minutes, while nurses and doctors rushed around the delivery room, seemed to throw all that preparation out the window. It was an overreaction on our part. He was doing pretty well for a “blue baby” and before we knew it, we had him comfortably lying in his crib at home.
We became parents. We woke up at all hours to give him a bottle. We braced for an ocean spray as we changed his diapers. We learned the secret parental scientific method for testing the bath water. We watched him grow. Our caffeine supplemented days didn’t bother us because Holden’s presence was amazing, and we loved the fact that we wrapped our lives around him.
Weeks passed, and CHD eventually reared its ugly head, sending a three months old Holden into an operating room. By his 14th month, he had required four operations to repair a distressed, broken and inevitably failing heart.
For us, those days in the hospital were often greeted by the difficult and heavy realization that our child was ill and will continue to be ill for an indefinite period of time. We tried not to ever let those feelings overcome the moments we had with him; we didn’t want to tarnish the unbelievable experience that was Holden.
As do most CHD parents, we went through every procedure, hoping and praying that one might be the fix. We were there for every hospital stay, every needle, and every drug. We felt every scream, every cry, and every tear. We watched him fight, and we watched his caregivers fight for him.
We never lost hope; we never let ourselves. Even when our child’s fragile little body had been through more operations than most will have in a lifetime. Even when we were told that a transplant is his last and only chance left.
On January 5, 2014, while awaiting that heart transplant, Holden Joseph Flynn lost his battle with CHD. His last breath ended two years, two months and 26 days after his first.
In that time after, we sought to build an organization to help all of Central Florida’s CHD patients. In that time, we’ve donated eight hospital-friendly wagons, started an endowment for a college scholarship, and most importantly supported families with over $30,000 worth of medical bills and other costs paid for.
Our favorite event happens every Christmas day (pre-COVID-19). We set up a coffee stand at Arnold Palmer Hospital to provide the patients, staff, and families with barista style beverages and pastries.
Can you talk to us a bit about the challenges and lessons you’ve learned along the way. Looking back would you say it’s been easy or smooth in retrospect?
We’ve been so fortunate to have the support of our community. People are always asking what they can do. Whether it’s donations, volunteering, ideas for their own events…we never have a shortage of support.
Including local personalities like Tom and Dan, podcasters who have greatly supported our cause. Businesses like Guardian Water, which has invested so heavily into what we do.
Appreciate you sharing that. What else should we know about what you do?
Yellow Brick Road: The Holden Flynn Foundation has no employees, we are completely a volunteer organization from members of the CHD community and beyond. That said, we’ve developed our foundation and raised hundreds of thousands of dollars using the resources that come from our day to day jobs and experience.
Alright, so to wrap up, is there anything else you’d like to share with us?
CHD affects 1 in 100 children. Chances are you know a child who has it. It might not require surgery or intense care, but for many it does.
As any CHD family can tell you, it’s a year round experience. It’s the interaction with the nurses and doctors who become your family. It’s drawing up the medication every day. It’s those amazing moments where you watch your child do things that doctors cautioned may never happen. It’s the support that comes when one of our children loses their battle.
There might not be an easy fix or a cure, but every step forward is a step in the right direction. We know as well as anyone that losing one child is one too many. For 818 days, we did everything we could to help our son, and for the rest of our lives we are going to do everything we can to help the world to better understand the disease that took him from us.
We talk about CHD because of Holden Flynn and Monroe Gonzalez.
Contact Info:
- Email: josephcflynn@gmail.com
- Website: www.ybrf.org
- Instagram: instagram.com/YBRFoundation
- Facebook: Facebook.com/YBRFoundation
Image Credits:
YBR
