A Heart for Reilly

—Winning the battle one obstacle at a time.

A Story of Hope

By Kayla Perla

“Reilly was born with a congenital heart defect. I found out at my 20-week anatomy scan that there was an abnormality on his heart” Dawn, Reilly’s mom, shares. “From there, they sent me to UF to be closely monitored.”

At 22 weeks gestation, Reilly was o cially diagnosed with Hypoplastic Left Heart Syndrome (HLHS), which means that the left side of his heart didn’t form correctly, causing the right side of his heart to be enlarged—because it was trying to make up for the left side’s malfunctioning.

^Reilly at three weeks old enjoying a mobile his nurse made from hospital labels.

“Just after Reilly’s diagnosis, I had lots of ups and downs. I struggled. Until one day, a song (“All of Me” by Matt Hammitt) changed my perspective, and it all just ‘clicked’ I know that whatever came our way, we would get through it with God.” Dawn, continues, “We anticipated 3 open heart surgeries once he was born. The rst was when he was 11 days old and the second when he was 5 months old, and then the third when he was three and a half years old.”

After his second heart surgery, Reilly did very well. “I was able to stay home with him for his rst 18 months, be there for him and keep him from getting sick,” says Dawn.

Reilly’s third surgery was completed in August 2019, when he was three and a half years old. However, just a short 8 months later he went into heart failure.

His heart was working at 10 percent. He was then listed for a heart transplant in May of 2020. He was able to go home stable, and be managed for heart failure for two months during the summer. On August 5th, 2020, his heart crashed and he was admitted again for heart failure, now unstable. His kidneys and liver were also in failure. The next day, his pancreas went into failure. “They gave us two options: hospice or a mechanical heart,” Dawn explains. The doctors did a paralyzed sedation on him to help his organs recover, and one and a half weeks later he was okay to receive a mechanical heart. Reilly was placed on the transplant list for a heart. However, after the transplant testing began to take place, it wasn’t the best news—he had 99 percent antibodies, which meant Reilly’s body would reject 99 out of 100 hearts. Thankfully, the doctors suggested a type of chemo that would help attack the antibodies, not the normal type of chemo, for Reilly. That, in conjunction with a treatment called plasmapheresis, it successfully brought his antibodies down to 48 percent. “I call him my boomerang kid,” says Dawn. A normal day for Reilly looks something like: Waking up, taking medicine, playing on the oor play mat or sitting in the chair. Next Physical Therapy and Speech Therapy visit. Child life will come to help with IV bandage changes or anything Reilly happens to be struggling with that day. Once those activities are completed, he hangs out with the nurses or mom, watches TV, and plays with toys until bedtime. “Reilly has also been recently able to get out to the

“It all just campus garden again. His Berlin Heart ‘clicked’ I know can only be unplugged for 30 minutes that whatever at a time which limits what we can do came our way, we with him. Thankfully, the garden has would get special plugs meant for the Berlin Heart through it with machines, so the kids are able to get God.” outside,” Dawn shares. —Dawn Dreoff There are not many ve and a half years olds as brave as Mr. Reilly Rogers. He and his family have been on a journey for his heart since before he was born. Life is a pure miracle as the Rogers family has experienced rst-hand as they’ve been winning one battle at a time for Reilly’s heart. Reilly excitedly awaits a heart donor so he can return home to be with his family. ■

Reilly’s Berlin Heart machine. It must stay plugged in at all times with the exception of 30 min walks. This pumps Reilly’s blood through his body acting as his heart, mechanically. If you would like to follow along on their journey, follow them on Facebook: Reilly Strong. If you would like to send them a note of encouragement, here’s their address: PO Box 551, Lake City, FL 32056

KIDS NEED TRANSPLANTS TOO

“With my older children, I had never thought of donating organs,” says Dawn. “Now, if something were to happen, we would be donating.”

When parents suddenly lose a child, often the last thing on their mind is to donate their child’s organs. However, if you knew you could donate and help save another child, would you?

“Until Reilly got on the list, I didn’t know the need for donation,” Reilly’s grandmother, Nancy Rogers, shares. Organ donations save lives. You may not think of it for yourself or children. If you take away anything from Reilly’s story, just be aware that organ donations save lives no matter the age of the organ donor!

Reilly spent almost a month sedated and paralyzed when his heart, liver, kidneys and pancreas failed in August 2020