The old saying that someone with strong emotions wears his heart on his sleeve is not nearly enough for Aydan Ellis.
Aydan – just 3 years old, only 35 pounds if you include the tubes sticking out of him – wears his heart outside his chest, hanging in front of him.
A machine heart, called a Berlin Heart, attaches to another machine on a stand Aydan calls ‘Ikus’ because that is its name. The outside heart and machine pump Aydan’s blood through his tiny body because his own heart can’t pump enough.
But Aydan, who is known as the “Spiderman” of Levine Children’s Hospital – with the webbing on the ceiling and the Spiderman blanket and the courage of a superhero – climbs. Somehow, he smiles, walks, talks, laughs and plays.
Aydan heroically pushes up tiny steps to his hospital bed that has been home for four months as he waits for another tiny heart to fit in his chest and save him.
“Up,” he said, as his tiny legs go up tiny steps and his smile pushes the walls back with its breadth and its courage.
He points at his arm where another kid might show a muscle.
“My IV,” he says. He points again. “That’s Ikus.”
Ikus is the machine his Berlin Heart – which pumps blood outside his body and back in – is connected to. It is so complex it can only be described as magic. The Berlin Heart was invented for tiny patients too small for an artificial heart. It is a miracle.
“My special heart,” Aydan said of his Berlin Heart, and Ikus, but he meant more.
Aydan’s special heart is his own valor.
He is embraced, hugged and cared for by a team of doctors and nurses and clinicians and more who have been captured by Aydan’s smile, grace, charm and wit.
A nurse, Jessica Earhart, rolls around in a chair for Aydan in the Intensive Care hall, where the world has such tension that families rush out in tears. There seems to be no doubt that rolling around in a chair is against some rule somewhere.
She does it because it brings a smile.
Aydan brings a smile to a medical world filled with children who need one.
And he has girlfriends – a whole sixth floor of grown women, all medical people at Levine Children’s Hospital, where, among the most heroic children in the world who are dealing with disease and trauma and the worst life can throw at them, he is a star.
A star like his late great-uncle from Rock Hill, Jimmy Ellis. Jimmy Ellis was the lead singer for the Trammps who had the 1970s hit song “Disco Inferno.”
Aydan is a natural performer and star. His eyes, so big and liquid like pools of obsidian, mesmerize anyone who looks into them. His hug is electric. His fist-bump knocks down walls.
Yet he waits. He is a sick little boy who needs another child somewhere – and this is the sad truth – to die, so Aydan can have that kid’s heart and live.
Aydan was born with congestive heart failure, and it has gotten worse, He had a stroke at age 3 that left his family and a hospital wondering if he would ever use his tiny right arm and leg again. He fought and rehabilitated and did not give up at age 3. His courage is the talk of the sixth floor, the hospital.
Yet Aydan cannot leave the hospital, and has not for months, because he waits on a heart. His mother, Miriam Ellis-Gibson, knew four months ago when Aydan was fatigued, lethargic and sick with the flu that it was more than a brief illness. She raced to get him to the hospital, and he has been there ever since.
Aydan’s recovery from the stroke has been incredible, and his mom has stayed at Ronald McDonald House, a place for families of sick children to be close by.
“My son, this incredible young boy, he lifted his arm again and it was a manifestation of his progress,” his mom said.
Medical team social worker Lynn Puma said Aydan is “one of the most determined people of any age I have ever seen.”
The team of about 10 medical people has worked for months to get Aydan ready for a transplant. But they wait. And wait. Aydan is on the transplant list and close to the top but there is no timetable. Nobody knows when it will happen.
No one knows when death will bring life.
Transplant coordinator Kati Robinson put it in language all can understand: “The waiting is the hardest part.”
Aydan’s mom has incredible faith – and empathy for some other unknown family from which a heart will come for her son. She would give her own heart if she could. But she can’t.
“Through all this I have found that we all have to give back, to find a way to help another person,” she said. “Donors give life.”
Miriam has become a fierce advocate for people, including parents of children, becoming donors to save others.
Saturday at St. Mary’s Catholic Church in Rock Hill, the community will give back at an event to raise money for the expense of what the family has gone through, and more, a donor awareness program. From 2 to 5 p.m. at the church at 902 Crawford Road, Aydan’s courage and the courage of all organ donors – including parents who donate the organs of children – will be celebrated. Many Rock Hill businesses, churches and people have donated to sponsor the event. People from LifeShare who advocate for organ donors will be on hand to explain how organ donation saves lives.
Aydan won’t be there. He can’t leave the hospital.
So Aydan does his physical therapy and his walks around the sixth floor and watches “Annie” – the movie where the star sings, “The sun will come out tomorrow.”
He plays games on his mother’s cellphone and he climbs. He climbs up the bed as adults wait for another child to die somewhere in the United States, so Aydan might live.
That brutal reality makes even the hardest hearts melt, and the stone-faced cry on that sixth floor where every child is sick and courageous. The medical team and Aydan’s family know the donation of organs, the giving of a heart, is the only way this Spiderman will live a full life.
Aydan’s sneakers have the word “Superman” on them. But even Superman had kryptonite. Aydan’s kryptonite is his own heart.
Aydan was asked in his hospital room what a heart does and is. This is a kid with a machine heart in front of him, attached to him. He knows “heart.” He sees it every waking moment.
Yet Aydan did not say a heart pumps blood. He said one word.
Want to help?
A Go Fund Me page online has been set up for Aydan. Visit https://www.gofundme.com/25w9nbg.
The benefit and donor awareness event for Aydan is from 2 to 5 p.m. Saturday at St. Mary’s Catholic Church, 902 Crawford Road, Rock Hill. Included are speakers from LifeShare on organ donation, massage therapy, refreshments and other programs for people of all ages.