Friday, July 25, 2014

Monday, April 14, 2014

Thank You Knight-Thon

Last Saturday, we were invited out to UCF for their annual Knight-thon Dance Marathon (If you’ll recall, we took Holden out last year). It’s a student run event where young adults shamelessly sacrifice their bodies for 20 hours by continuously standing on their feet to raise money for Children’s Miracle Network Hospitals. It’s undoubtedly a daunting task, one which requires a carefully calculated and balanced regiment of hydration and caffeination. In the end, these students are probably left to be human slugs, pulling together whatever energy they have left and dragging their bodies carefully across campus and into their beds. But it’s all for an awesome cause.

The 2014 event featured around 800 dancers and set a record and raised $392,381.65. It’s something that everyone who participated should be proud of, and we say that having personally witnessed what this money go towards.

That being said, sometimes we forget the impact that Holden had on others' lives, that includes these students. Shortly after Holden’s passing, they reached out to us, sent us cookies, and showed up in droves to his service. When they asked if we’d join them on Saturday, we didn’t hesitate to say yes.

As we got to the arena, we were greeted by a giant heart penned with Holden’s name and covered on hundreds of silver signatures. We walked into the venue, and were approached by several students on the Knight-Thon committee. Each was wearing a red heart with a Tin Man hat, and the name Holden on it. To the side of the dance floor, sat a table of pictures of Holden. The balloon logo? If you look closely you’ll see the word, “Tin Man” placed in it.

To say it was an emotional moment is an understatement, but it was all so well put together. As Knight-Thon director Chelsea Trynz walked out on the stage to open the event, she was followed with the aforementioned giant heart. She braced the microphone, and began to speak about Holden and his fight. You could tell it was tough for her to do, but she hit a homerun. 

When we took the stage, we were so choked up with the kind words that Chelsea had said, that I struggled to throw together complete sentences, and I apologize for that. 

Written words make it tough to express our gratitude towards the gestures of Knight-thon…So much work went into not only standing for 20 straight hours and giving up a weekend, but organizing such an event and carrying it through with the success they did. We’ve witnessed the impact that Holden had on their lives, but they’ve had an impact on ours and I know every other Miracle Family feels the same way.

Keep on doing the good deed Knights, and from the bottom of our hearts, thank you.

Monday, March 24, 2014

Graphics Arts Volunteers Needed!

With the foundation a mere weeks away, we need your help! The (Proposed) Board of Directors for the new foundation is looking for logo ideas. If you're graphically artistic and would like to volunteer to help, we'd love to see what you can do for us. A few things to know:

(1) We welcome all submissions! Any designs submitted will be presented anonymously to the the (Proposed) Board of Directors for voting.

(2) We are looking for a simple design. Someone that can easily become recognizable.

(3) Please remember we are limited by some copyright, designs shouldn't use anything that is the property of another.

(4) The foundation's name is still pending 100% approval (it will likely be granted), but until it's approved we've got to keep it under wraps. Please email me if you are interested in submitting a piece, and we'll let you know all the details. Email -

(5) Submissions are needed NO LATER than April 20th.

Holden's Story:

Sunday, March 2, 2014

The School That Raised $1000

We are forever thankful to everyone who has donated to the Holden Flynn Fund, and as the paperwork is currently pushing through the ringer, we wanted to highlight a certain group of kids.

St. Andrew is a Catholic School here in Orlando that has hosted 3 generations of Trey's family. The first grade class, behind the effort of our cousin Capresse spent all of February selling fruit snacks to the remainder of the school. She made an announcement on Facebook Friday night.

Well, the St. Andrew First Grade classes did it! We raised $1,000.00 for the Holden Flynn Fund! The First Graders will continue to share their hearts in the hopes to fix so many little hearts.


Friday, February 14, 2014

The Holden Flynn Fund Update

We've had the fund open for a little over a month, and it is with great privilege to say that we've surpassed our start-up goal of $10,000. That means, in the coming weeks, we can begin laying the groundwork for the foundation. It will take some time, as there is a lot of legal-based hoops to jump through, but you'll know when we're ready.

Thank you to everyone who has donated. You're not only donating in Holden's name, but you're helping carry on his legacy while assisting other CHD families. You can believe us when we say. our heart is going to be poured into this foundation.

We are STILL accepting donations. All that great information is available under The Holden Flynn Fund tab. Please feel free to pass it along.

Finally, please keep your ear to the ground. We are going to be hosting a small "happy hour type" fundraising event in the coming weeks. Details are being hammered out now.

As always, if anyone has and fundraising ideas, or just wants to help in some way, please et us know.

Thank you!

Trey and Nicole Flynn


Thursday, February 13, 2014

The Work of Fabio Napoleoni

Our friend Mick introduced us to the work of Fabio Napoleoni last weekend. He is an amazing artist, who is also the parent of a CHD child. He has put a lot of that experience into his work.

Take a minute and listen to his story, and then marvel at his work.


Monday, February 10, 2014


Last Friday you all came together and sported your finest reds for CHD Awareness. Check out the slideshow. (And if you have one for us, send it our way) #RedForHolden #CHDAware

The Holden Flynn Fund: February 7, 2014

On October 11, 2011, our son, Holden Joseph Flynn, was born with a complex congenital heart defect (CHD). By his 14th month of life, he needed 4 operations to repair his distressed and broken heart. Simply put, he went through more medically, than most of us will need in our lifetime. 

As parents we were there for every procedure. Every hospital stay. Every needle. Every drug. We watched him fight, and we watched his caregivers fight for him.  

On January 5, 2014, while awaiting a heart transplant, he lost his battle with CHD.
Holden certainly isn’t the first child who has been through this. We’ve met so many families that come armed with similar stories of the amazing CHD battles they’ve watched their children fight through. Many end with victories, while others pass fighting an honorable battle until the end. There is one common theme though, a strong family, banding together to help their child in need.

Over the last two and half years we’ve been blessed to share Holden’s story as he carried on his day to day fight. His hospital featured him in a film, “The Tin Man”, that not only won national awards but opened avenues that allowed him to be an advocate for all CHD children. 

When learning of his defect we made a commitment to educating ourselves and teaching others about all aspects of congenital heart defects. We always said that once Holden was stable, we would do even more for the CHD community. With his passing, our goal remains the same. 

It is time for CHD to step out of the shadows and into the public consciousness. It is the number one birth defect in the world, affecting about 1 in 110 children. Not a day goes by where we don’t feel the masses need to know more about these noteworthy victories and the hard fought losses. And while survival rates have increased over the last few decades, that doesn’t change the fact that it still has a long way to go. CHD lags behind most childhood diseases in both awareness and funding.

We created the Holden Flynn Fund on January 8, 2014 to help us build a foundation that will continue Holden’s fight in spirit. As we approach American Heart Month and CHD Awareness Week we write asking you to help us achieve this goal. We’re committed to creating a foundation that would not only make Holden proud, but allow us to continue to leave The Tin Man's mark on this world.  

Over time we will do everything from assisting displaced heart families, to fundraising for research, and raising awareness at the highest levels. For two and a half years we dedicated our lives to caring for our son. For the remainder, we are dedicating our lives to helping the world to better understand such a crippling and unknown disease.

CHD might have taken our son’s life, but that does not mean it has to take the life of another child.

Please join us in making this foundation a reality and thank you for your support.


Trey and Nicole Flynn
Parents of Holden “The Tin Man” Flynn

Donations to Holden's fund can be made payable to "Schwab Charitable Fund for the benefit of the Holden Flynn Fund" and should be sent to:
David Vaughan Investments, Inc.
Attn: Amy Cowen
5823 N. Forest Park Drive, Peoria, IL 61614

OR ONLINE (Please understand that the donations added via Fundly will be later wired to the Schwab Charitable Account. Tax deduction letters will come through Fundly and NOT Schwab) For LARGER donations you are encouraged to directly send a check or money order.

All donations are tax deductible.

Sunday, February 9, 2014

Opening CHD Awareness Week with a Bang

It was cold, dreary, rainy, and wet, but we couldn't have asked for a better day.

First place. Thank you to all who helped us make this possible. Pictures below.


Wednesday, February 5, 2014

CHD Awareness Week 2014

As continue to build a charitable foundation to carry on Holden's fight, we step into American Heart Month and Congenital Heart Defect Awareness Week (February 7-14th). These are some of the biggest days of the year for CHD families. I know we've listed some events on social media, but I thought it might be a little less scatterbrain to put it all on one blog page.

All Week - The Holden Flynn Fund: We have started off with an absolute bang, but still aren't where we need to be to comfortably meet the start up costs for the foundation. You can still donate (or encourage others to donate!)

Donations to Holden's fund can be made payable to "Schwab Charitable Fund for the benefit of the Holden Flynn Fund" and should be sent to:

David Vaughan Investments, Inc.
Attn: Amy Cowen
5823 N. Forest Park Drive, Peoria, IL 61614

We are working on the online donations NOW, and hope to have that up and running by FRIDAY. 

Now through February 14th NEED VALENTINE'S DAY FLOWERS? Windermere Flowers and Gifts will be donating $1 from every arrangement ordered for pickup or delivery February 13th or 14th to the Holden Flynn Fund.  You can order by calling, 407-296-9002, or by going online to and clicking on "order on line" in the top right corner. Tell them The Tin Man sent you!

February 7th - Wear Red for CHD Awareness! Please spread the word and tell people WHY or WHO you are wearing red for. Send us your pictures! Be crazy! We want to see them. And use the hashtag #CHDAware #RedforHolden (or whoever you're wearing red for)

February 8th - The Orlando Chili Cookoff - Join us with Mended Little Hearts of Orlando at Festival Park by the executive airport. We'll be wearing our red, and spreading CHD Awareness via the power of chili.

Tickets can be purchased at this link!

We have a large spot located with our backs to Primose Drive. We're also conveniently within shouting range of the Pepto Bismol distribution tent and the Port-o-Johns.

February 15th - Orlando Solar Bears Game: We'll be at the Orlando Solar Bears game for American Heart Association night. Tickets are only $15 and a portion of the proceeds goes to Mended Little Hearts of Orlando Heartwalk team. Holden was part Canadian anyway :-).

Tickets for Mended Little Hearts can be purchased here.
Password: HEART

Any other ideas or plans? Let us know. We're open for anything to spread the word.

Wednesday, January 8, 2014

The Holden Flynn Foundation, Inc.

Nicole and I always said that once Holden's heart issues were stabilized, we were going to do more for the CHD community. This past December our family took the steps to create a foundation in Holden's name to assist us financially when we had to relocate to Gainesville. With his passing, we are still going through with their plans, but changing the direction of the foundation to carry on Holden's fight and spirit.

As many of you know Holden always enjoy his wagon rides, (or parades as it was sometimes called). We'd take him all over the place, and the slightest pause was greeted to with a quick command of "Go!". As his health declined, the number of IV’s he required sometimes limited that wagon time, or made it difficult to travel because of the number of people needed to participate. It was tough for him, because Holden needed that time. It was his his time.

We are going to take a portion of the initial money donated to the Holden Flynn Fund and purchase of some wagons and cars fitted with IV poles for the hospital. We want to give other hospitalized children the opportunity to go on parades and experience those same joys and freedoms that Holden felt regularly. 

The ultimate goal of the Holden Flynn Fund is to create a foundation that will honor the spirit of our son and his battle with CHD. The ball is rolling, and in the coming weeks and months we will have more details as we assemble the appropriate paperwork. If anyone wants to assist, please feel free to email us, and we'll be in touch in the future.
Donations to Holden's fund can be made payable to "Schwab Charitable Fund for the benefit of the Holden Flynn Fund" and should be sent to:

David Vaughan Investments, Inc.
Attn: Amy Cowen
5823 N. Forest Park Drive, Peoria, IL 61614

OR ONLINE (Please understand that the donations added via Fundly will be later wired to the Schwab Charitable Account. Tax deduction letters will come through Fundly and NOT Schwab) For LARGER donations you are encouraged to directly send a check or money order.

All donations are tax deductible.

Thank you, Trey and Nicole Flynn

Please feel free to share this with your family, friends, etc. 

Tuesday, January 7, 2014

The Tin Man's Heart Watch Day #65

With heavy hearts, we write this.

At 3:30 PM yesterday Holden Joseph Flynn passed away in the loving arms of Nicole and with family by his side. He lost his battle with congenital heart disease, but fought like heck until the end. We will miss our son. Our Tin Man. Our hero.

Thursday, January 2, 2014

The Tin Man's Heart Watch Day #62

Oh hi.

The Tin Man's Heart Watch Day #61 (HAPPY NEW YEAR)

Holden? He didn't make it to 7:30pm, much less midnight.

Mom and dad conquered dinner at a local establishment. While driving back to the temporary abode we drove past the campus at the University of Florida. In our years at the school, we were never around for New Years, so checking out the campus life on this kind of night intrigued us.

There were maybe 5 students in town on New Years Eve. Every establishment across from campus was closed...except for one spot...When we saw the lights on we pulled over and walked into one of our old college stops for a beer. It was nice. First time we got a spot on the street up front, and the first time we got a booth.  We even ordered the Natural Light or whatever skunky swill they had for $1. You'll see in the picture below, it was relatively empty.

Despite those shenanigans, we didn't last long, and found ourselves back at the temporary abode to watch the ball drop. I called at 11:45 to check on Holden, telling the nurse we were going to bed. When she asked why we weren't staying up until midnight, I replied, "We are, but only to make sure the world didn't end."

Happy New Year!

The Flynns.