(FOX 2) - Seeing him makes you smile. Three-year-old James Howard is full of life. But what you don't see under a big scar on his chest is the heart of a little girl.
"We can tell that her spirit is with him," says James' mom, Kylie Howard.
In 2016, before James was even born doctors knew he had a heart defect but no one could guess how bad it would be. Before he could even go home from the hospital his heart started failing.
"At one point he was so sick that we couldn't even feed him. We had to give him nutrition through an IV because to feed his stomach would cause significant problems," pediatric cardiologist Jennifer Blake at Children's Hospital of Michigan said.
An ultrasound of his heart showed doctors at Children's Hospital of Michigan severe abnormalities. They knew without a new heart that baby James would not survive. They quickly put him on the waiting list.
"You wait. It's based on size, so body weight and blood type," Blake said. "So you just wait and you hope that the organ and the donor family that you're waiting for is going to say yes."
For mom Kylie and dad Jimmy, the tragic thought of another family losing a child before theirs can survive is overwhelming.
"You don't want to pray for these things; I was just praying for James to make it," Howard said.
After more than a month comes the news of a donor heart. Kylie faints with relief and fear.
"It was more fears because you're about to go under this 16-hour surgery and watch your son's heart come out as a new one comes in, and that's the part that was the scariest," Howard said.
The surgery was a success and afterward, James stays at the transplant center at the hospital for about a month. And then finally, 161 days after being born it's time to go home for the first time.
As the healing begins the Howards hoped to connect with the Chicago-area donor family. It turns out that family wanted to know more about the little boy who now has their child's heart. Eventually, the two families met on the shores of Lake Michigan.
"James was super shy at two-and-a-half-years old; he was really shy he didn't really walk up to anyone. So we're standing at the entrance of Lake Michigan and this couple was walking up - James let go of my hand and went up and hugged her."
At the time she was a stranger but James showed an immediate connection to Rachel, the mom of the donor child.
The gathering was filled with tears and joy. At one point Rachel placed a stethoscope on James' chest so she could once more hear her little girl's heartbeat.
James has inspired incredible closeness between the two moms.
James is getting stronger every day thanks to his family, doctors, nurses and medical technology - but mostly thanks to that little girl.
"We are happy for our families when we find a donor but we, pretty much at the same instant are heartbroken for the family that's made that decision," Blake said.
"Thank you for making those choices to donate life, to save another child and another family," Howard said.
"The true heroes in this story are the donors and their families," Blake said.
The Howards thank Gift of Life Michigan which was key in facilitating this organ donation.
We were introduced to James through Jay Towers' Jay's Juniors program at 100.3 WNIC. That program provides an all-expense-paid trip to Disney World for kids who are handicapped or have an ongoing or terminal illness along with their families.
This will be the Howards' first trip together.