Camden's Story (TAPVR)

This is Camden's story from the words of his mom, Patty Cheshire.

Camden was born right on his due date, October 3, 2004, and weighed a healthy eight pounds, five ounces. We were elated, until a nurse took him for his first bath. Under the bright lights in the nursery, she noticed something about his skin tone that concerned her. Eleven hours later, we were told that Camden had a heart condition called Total Anomalous Pulmonary Venous Return (TAPVR). Our new baby required immediate, open-heart surgery.

There was no time to research his condition or compare hospitals, no time to talk to other parents or to get a second opinion. Only later did we learn just how fortunate we were that we delivered Camden in Pittsburgh, just a few blocks away from the Children’s Hospital, where a pediatric heart surgeon had just moved up from Florida with his team. Camden sailed through the surgery and recovery, and I am grateful beyond words to everyone who took care of him during his most vulnerable time.

Nels Matson is the first person my husband and I have met with the same heart condition as Camden. Just knowing that he is out there, twenty-seven years old and strong enough to bike across the country brings us so much hope for Camden’s future. Camden and his older brother Colin were just as excited as we were and had been drawing pictures, making video greetings for Nels and Denise. Bike 4 CHF was Colin’s show-and-tell at school and Camden’s answer to every “What are you doing this summer?” My husband Devon stepped up the work-outs for his 100 mile ride with Nels, and I started and ended every day checking the Bike 4 CHF blog.

Seeing Nels and Denise come around the corner in Melvan was just a great moment, not only for my hopes for my own son but for all the heart families. They are just as warm and fun in person as you are picturing. Out came the bike with all the names written on it, and there was Cole, the little boy who was about to have his third open heart surgery. There was Cora, the baby who only lived for five days but who is going to save countless lives because of her mom’s bravery. There was Luke, our on-line TAPVR friend, who made a little video for us at the Ohio stop. There was AJ Kahler. Since AJ passed away, his mother Denise has held two golf outings for CHF in his honor, and she has knocked it out of the park both times.



Anxious to make sure he wouldn’t hold Nels back, Devon brought along all the protein bars and fuel he’d need for the ride, only to find Nels got through the trip on Mike & Ike candies. (Mike & Ike, are you listening? Nels just biked across the country on your candy. You need to sponsor this guy!) We said goodbye, and I drove back home to find the boys had been busy turning the tree fort into a jungle for Nels and Denise’s arrival.

Even though he had a long day on the bike (and not because of Devon, he assured us), he had plenty of energy to spend some time in the tree fort and let the boys get to know him. Sunday evening, we had a wonderful turn-out for the Meet and Greet. Watching Camden hold sweet Lily, his youngest heart friend, was a happy moment for her mom Laura and me. While Fox News filmed, Lily, Matt, Andrew and Aaron’s names were added to the bike. Each of them has a powerful story to share, and everyone was proud to be there.

ABC News called while we were still getting ready the next morning. They were already waiting for us at the Wayne Art Center. Denise and Nels were the calm professionals; I was the one screaming “Don’t let the reporter leave! We are leaving NOW!” We had a great turn-out for the morning ride on Radnor Trail as well. Board member Kelly Ryan signed the bike in honor of her husband, whose heart was fixed when he was a toddler. I’d met Pam when I was picking up a donation for Hopping for Hearts, my first local fundraiser, and she was there to sign her son Brett’s name. Camden already had his spot picked out and added his name to the bike. Owen passed away when he was five and half months old, and he is the reason I helped start the Children’s Heart Foundation- Pennsylvania Chapter. Colin added Owen Benedict’s name to the bike.

As Nels started his final stretch, he was surrounded by all these little kids, ages four to seven. Some of them heard about the event from Colin’s show and tell, some were from Camden’s class. All of them seemed to know they were part of something special. ABC News captured Camden and Nels riding together. “Almost the same heart, almost the same birthday,” is how Camden describes their friendship. I call it heart research, showing off.