CINCINNATI — There's a little boy at Cincinnati Children's Hospital counting down the days until someone gives him a new heart, and he is hoping to watch a Reds powerhouse playoff performance while he waits.
At just 8 years old, Allen Tumey is a warrior.
He was diagnosed with several complex congenital heart defects (CHD) at birth: tricuspid valve dysplasia, atrial septal defect (ASD) and pulmonary atresia. That means some of Allen's heart valves didn't develop correctly and he has a hole in his heart. He is also nonverbal.
WATCH: Hear Allen's mother describe his medical journey
Allen had his first open-heart surgery at one week old. He's undergone two more since then, plus additional surgeries unrelated to his CHD. Following his third open-heart surgery, known as a Fontan, which reroutes oxygen-poor blood from the body directly to the lungs, Allen's mother said he developed complications that persisted for several years.
"We ended up going to the Children's Hospital of Philadelphia for a lymphatic procedure, and that gave us a year free of issues," Stickrod said. "I think it was in April of last year that he just started going downhill. He was in the hospital at least once a month every month for, if not an illness, a fluid overload."
In January, Allen was diagnosed with RSV and coughed up a cast, which is a solid, tube-shaped structure that forms in the airways of the lungs, typically made of mucus.
Allen was diagnosed with plastic bronchitis a month later.
"After that, (doctors) decided to list him for transplant because he's also in stage 4 lymphatic issue, so basically he's in Fontan failure," Stickrod said.
Allen was put on the heart transplant wait list on May 22. He was admitted to Cincinnati Children's on June 9 with a fluid overload. He has been at the hospital ever since.
"The days go by really quickly because I'm busy at work and hanging out with him and the other kids when I can," Stickrod said.
The mom of four said Allen's diagnoses were scary, but nothing she couldn't handle. All of her kids have spent time at Children's. Two of her older children also have CHDs.
Allen undergoes near-daily oxygen treatments and vest therapy while inpatient. Despite that, he remains happy and active.
"If you looked at him, you would look at him like, 'Why is he even here?' Because he's so active," Stickrod said. "He runs around the unit. He loves the nurses; they love him. He loves his patient care assistants (PCAs)."
Stickrod said the days have also been easier thanks to the support of other transplant families and her fellow Heart Mom Warriors. Though not an official group, it is a collection of women around the world who rally behind other mothers whose children have CHDs through different means.
Heart Mom Warrior Stephanie Blatt Middleton alerted us to Allen's story.
"It makes me feel really good that she has my back. She has been helping me. She encouraged me to make an Amazon wish list for him, and after I posted it, he got everything that I posted," Stickrod said.
With Allen now busy with a stockpile of his favorite toys, his mother has one other big ask, and she's hoping this one will be a grand slam.
Allen loves his Cincinnati sports teams, especially the Bengals and Reds. With the latter in the playoffs for the first time in years, Stickrod said watching them win will bring a smile to Allen's face.
"Let's focus our attention on the Reds this week," she said.
We reached out to the Reds on Tuesday. We are working with the team to get a gift pack sent to Allen's hospital room.
Stickrod said every day is a waiting game. He can be notified of a transplant approval next week or next year. No matter how long, she said she is hopeful.
"My biggest wish is for him to get his heart so he can come home," she said. "So he can maintain his normal childhood, or what he can of it."
