SOUTH WILMINGTON — These days, Evan Simms is a pretty normal 3-year-old.
He likes trucks, tractors and cows.
He likes being held, but often prefers to run around. He likes watching YouTube videos, operates an iPhone better than some adults, and has a knack for making jokes.
“He is constantly making us laugh,” said his mother, Anne. “I’m afraid we have a class clown on our hands.”
His life now, in which he is “very, very, very” active and “never stops,” is moons away from the first two years of his life, when he spent much of his days on dialysis.
He was born with cysts in his kidneys, rendering one of them completely useless and one barely functioning.
That means he couldn’t clean the toxins out of his body, and he had to be hooked up to a machine at a hospital for up to 18 hours each day... until 2011, when he received a donation from an unlikely source.
According to the National Kidney Foundation of Illinois, one in three American adults is at risk for kidney disease, and one million Illinois residents already suffer from it.
On June 30, about 2,000 people — including Evan Simms, his family and his donor — will participate in the National Kidney Foundation’s Gift of Life Walk in Chicago, a 3.1 mile trek by the lakefront beginning at Soldier Field, to raise awareness of kidney disease and money to help fight it.
This is a story about how Evan Simms got a kidney, an organ we tend not to notice until it doesn’t work, and about the Chicago woman who donated it to him. But it’s also a story of struggle and sacrifice, of the strength of family and the extraordinary kindness of strangers.
And it begins in a hospital room.
“THE HARDEST THING”
Evan Simms was born with multicystic dysplastic kidneys, a condition that affects about one in 2,400 live births in the United States.
The kidneys serve numerous regulatory roles in the body, monitoring electrolytes, acid-base balance and blood pressure. Perhaps most importantly, they filter toxins from the blood, sending waste to the urinary bladder.
“I had no idea how much the kidneys do,” Anne Simms said.
Evan’s kidneys wouldn’t get the toxins out of his body, and he started off with 18 hours a day on dialysis. Soon, his parents were able to bring him down to 12 hours a day, then even less.
But it still meant days spent in a Loyola hospital room in Chicago while his parents juggled work, education and trying to provide a normal life for Evan’s 5-year-old sister with caring for him.
“That was probably the hardest thing,” Anne said.
But they pushed on, making it work with the help of a supportive family and “phenomenal nurses.”
“They were like part of the family,” Anne said. “They made me feel so much better.”
In the spring of 2011, Anne found she was a match with Evan, and was prepared to donate a kidney to her son.
But that July, another challenge faced the Simms.
After Evan began behaving strangely, they took him to the emergency room, where it was discovered he had liver cancer.
“That was a hard blow,” Anne said.
Doctors caught the disease early, and were able to treat it without chemotherapy.
But after removing part of his liver and giving him several blood transfusions, doctors found Evan’s blood type had changed and Anne was no longer a match.
Anne says she was devasted, but remained determined to get her son healthy.
“I’m not the type of person that’s going to lay down and give up,” Anne said.
One day, she got a call from Northwestern Children’s Memorial Hospital, now called Lurie Children’s Hospital, where Evan was then being treated. They could join a kidney chain.
Anne and her sister, Mary, signed up immediately.
A kidney chain is essentially a pay-it-forward organ donation program in which donors who don’t match the intended recipient can donate to a different person in the chain, allowing several people in need to receive kidneys.
It was through such a chain that then 25-year-old Megan Craig came into the Simms’ life.
“I NEVER REALLY THOUGHT ABOUT MY ORGANS”
Megan Craig didn’t know anybody who needed a kidney.
In fact, she’d never thought that much about her health at all — she’d never had surgery; she’d never even had her tonsils removed.
But about a year earlier, a family she knew lost someone to liver disease, which got her thinking about how fragile everything is.
“I never really thought about my organs before,” said Craig, 27, of Chicago. “You never really think about things like your kidneys unless they’re not working.”
To hear her tell it, that’s about all that it took for her to make a phone call that would eventually lead to her donating a kidney to a 3-year-old boy she’d never met.
“I just kind of woke up one morning and thought, ‘This is something I should do,’” Craig said.
At first, she called Northwestern Memorial Hospital, wanting to donate part of her liver.
They said she could not, but that they were looking for kidney donations.
Without much deliberation, Craig signed herself up and they matched her with Evan Simms.
“I WAS SCARED”
Craig did not know she would be donating to a child at the time. Hospitals do not tell the donor anything about the recipient in advance to prevent any coercion.
“They want to make sure you’re doing it because you want to,” Craig said.
There was never really a moment where she didn’t want to, although the surgery was difficult. She got nervous the day before, and cried as she was wheeled into the operating room.
“It was all surreal until it was actually happening,” Craig said. “I was scared.”
She remembers sitting in the hospital room, about to go into surgery, thinking, “What am I doing here?”
“I don’t doubt for a second I made the right decision,” Craig said. “But I look at it and it’s like, ‘This is what crazy people do.’”
“TOTALLY WORTH IT”
The surgery was microscopic, but involved making an incision. The surgeon reached in and pulled out the kidney with his hand, Craig said.
When she regained consciousness, the first thing she said to her husband was, “Totally worth it.”
In the time that has followed, she’s been proven to be right.
Three people got kidneys as a result of the chain, one of which was donated by Anne Simms’ sister, Mary, to someone who’d been waiting for seven years.
“Unless you see it first hand, you don’t know what a difference it makes to someone who needs one,” Anne said.
Megan Craig spent two days in the hospital recovering, but returned to work four days after the surgery.
Evan Simms, who has faced down more challenges in three years than some do in an entire life, is finally getting a normal childhood.
He’s catching up on developmental stages, such as walking, that he missed while he dealt with his illness.
“It has been so remarkable to watch him grow,” Anne said.
“He’s an incredibly spunky kid,” Craig added. “He doesn’t so much walk as he does run.”
Megan Craig and the Simmses connected after the surgery and are now extremely close, sharing holidays, birthday parties, and baseball games together.
Craig is part of the family, Anne said.
“It has been a life-changing experience,” she said. “She’s our angel.”
Craig said one of the most rewarding aspects of the whole experience has been getting to be part of Evan’s life.
“It’s really great to watch him grow up,” Craig said. “I have a big feeling of responsibility for him. It’s really been wonderful.”
For all the challenges they faced, Anne Simms feels grateful for the lives saved in the donation chain and Craig’s involvement with Evan.
“I believe everything happens for a reason,” Simms said. “And I couldn’t imagine it being a better outcome.”