In an unassuming home in Sicklerville, there’s a 6-year-old superhero. He’s brave, tough and energetic. Oh, and he’s half-robot. Three years ago, Chase Merriweather had amputations of both arms and both legs, but it hasn’t slowed him down one bit.
In October 2013, Chisa Merriweather and her husband Chad took their two sons, C.J. and Chase, to Disney World for a long weekend. When they arrived on Thursday, Chase, then 3, seemed tired, and Chisa thought he might be coming down with something.
“The next morning he was lying on the floor, and my husband was like, ‘OK, we need to go somewhere,’” says Chisa, 35. “At first we thought he was just dehydrated. He went to urgent care, and they said they couldn’t take care of him. They rushed him to a hospital nearby, but they couldn’t take care of him either. That’s when they took him to the Florida Hospital for Children. There, he went into septic shock and had to have emergency brain surgery for a hemorrhage.”
Chase was in the hospital in Orlando for almost a month, with his parents staying nearby. Merriweather was pregnant with her third son, and she says the weeks went by in a blur.
“It was a whirlwind,” she says. “My parents came down twice, and they took my oldest, C.J., back home with them. We were trying to keep him protected from all this. After the brain surgery, my husband got them to transfer Chase to the Children’s Hospital of Philadelphia.”
Chisa and her family spent long days at CHOP while doctors searched for a diagnosis. Chase had a total of five surgeries to address the symptoms of what was then a mystery illness.
“He saw every kind of specialist you can think of, and they looked at every possibility,” Merriweather says. “In the end it turned out to be a strain of the flu. He’d gotten a flu shot, but this was a strain the shot didn’t protect him against.”
Chase had been unconscious since his brain surgery more than a month earlier, and neither his parents nor his doctors knew what would happen when he woke up.
“We had no idea if he would be the little boy we knew,” Merriweather says. “Little by little, he started coming back to us. The first time he smiled, we thought, ‘OK, he’s gonna be fine.’ One day my husband sent me a video from the hospital of Chase in bed saying, ‘Mommy.’ From there, he started really showing his personality. The nurses got a kick out of him, because he’d dance to Michael Jackson and he made them all watch ‘Moonwalker.’”
The Merriweathers felt immense relief to have their son back, but Chase’s trials were far from over. Doctors found E. coli bacteria beginning to grow in Chase’s arms and legs, and the Merriweathers were forced to make a difficult decision to save their son’s life.
“There was so much damage, because his body’s immune system was trying to protect his major organs,” Merriweather says. “That means blood flow to his extremities stopped, and he developed necrosis. The doctors always give you the worst-case scenario first, so they’d talked to us a little bit about amputation when we were still in Florida. When they found the E. coli, they said the best thing would be to do the amputations sooner rather than later, so they could save his knees and elbows. He had the surgery in December of 2013.”
Merriweather says she and her husband struggled with how to explain what was happening to their toddler, but they were determined to find a silver lining.
“We wanted to make sure he would never be treated any differently because of his amputations, and it was important to us that he never saw us bothered by any of it,” she says. “When we explained it to him, we said, ‘Look, your hands and feet aren’t working, so we’re going to get you robot hands and feet.’ His older brother was in the room, and he got upset because he wanted robot parts too.”
During Chase’s hours-long surgery, Merriweather says she and Chad began brainstorming ways to make light of the situation for their family and for others.
“A lot of the ideas came while we were in the waiting room,” Merriweather says. “There was nothing to do but sit, and it was the most awful thing. My husband said, ‘How do we make this into something that will help him live a normal life?’ He had the idea right then that I should write a children’s book.”
Merriweather, a professional graphic designer, created “The Blueprint of a Little Super Hero – ChaseMan.”
“We made Chase into a superhero, and the book is about how he gets ready for the day,” Merriweather says. “It’s about how ChaseMan may do things a little differently than other kids when he’s getting ready. They put their shoes on; he puts his legs on. We used it to reintroduce him to school.”
Merriweather has now written a second book, “How My Brother Became a Superhero.” Written from C.J.’s perspective, the book details how Chase worked to fight off evil bacteria and gained his super powers.
Today, the Merriweathers have four boys – the youngest only a few months old – and Chase is a happy-go-lucky 6-year-old who plays sports and loves school. He also spends time visiting schools with his parents, where they read the ChaseMan books and talk about Chase’s prosthetic arms and legs.
“Chase gets a lot of questions and looks, and sometimes parents will tell their kids not to stare or not to ask about it,” Merriweather says. “We don’t want kids to be afraid. We want them asking questions and getting answers. It’s better to ask than to sit there and wonder. When we do book readings, Chase shows off his arms and legs, and I think that’s really helpful for other kids.”
The Merriweathers started a nonprofit called Chase Ur Dream, and they travel all over the country to speak to other families about life after amputation and limb loss. They hope to do enough fundraising to be able to support families in similar situations.
“We’ve gone to camps and events all over the country to promote awareness and show that these kids can do anything normal-bodied kids can do,” Merriweather says. “We don’t want them to limit themselves. We want them to lead normal lives. Chase went to California with the Challenge Athletes Foundation. We want our organization to be able to send kids to places like that.”
Merriweather also hopes Chase Ur Dream will help parents afford the specialized prosthetics that keep their children up and moving.
“Prosthetics are so expensive, and right now the way Chase is going we go through two a year for each limb,” Merriweather says. “It’s not like we can say no. Before insurance, one prosthetic can cost, on average, $50,000. We’re raising money for families who have trouble with that price tag.”
Chase’s outlook on life is simple: he’s a kid, like any other. And while they know their son is special, Chisa and Chad Merriweather are determined to give Chase a normal, happy childhood. Everything else is just details.
“Chase can run, and play and draw. He played on a baseball team last spring,” Merriweather says. “He can swing a bat, just like any other kid. He’s exceeded so many people’s expectations. He does everything a normal 6-year-old would do. We don’t want him to have to rely on people. We want him to be as independent – and happy – as possible.”
