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'Ghost Boy,' wife were told they couldn't have kids — but now expecting baby boy

For more than a decade, Martin Pistorius was unable to move or speak. Today, he is thriving: He and his wife are expecting a baby.
/ Source: TODAY

They were told it wouldn’t be possible to have children. IVF was not an option. It just wasn’t in the cards.

Martin Pistorius had already lived an incredible, unbelievable life. Born in South Africa in 1975, Pistorius came down with a mysterious illness when he was 12. For more than a decade, he was unable to move or speak. His family was told he was unaware of the world around him, but in fact he could hear and understand everything. He just couldn’t signal that to anyone for years.

He would eventually tell his story in a best-selling book, “Ghost Boy,” published in 2013. Today, Pistorius is in a wheelchair and communicates with the help of a device that speaks the words he types into a computer.

“For so many years, I was like a ghost. I could hear and see everything, but it was like I wasn't there. I was invisible,” Pistorius said in an interview with me in 2016, in his hometown in Essex county, England.

When we spoke then, he and his new wife Joanna said they were hoping to start a family. But a year later, Martin and Joanna made their peace with doctors’ warnings that they would never be able to have a child. They sold the baby things they had gathered over the years.

Then this spring, after a visit to the U.S. from their home in London, Joanna thought she had food poisoning. “For some reason, she thought to do a pregnancy test,” Pistorius wrote in an email. “When the result was positive, we both didn't believe it. Put it down to the test being old. We bought a new test, several in fact, all positive. We were both shocked and elated!!! We couldn't believe we had been so blessed.”

Martin during his illness.TODAY

Joanna is just over 20 weeks along now and they’re expecting a boy.

“Initially, I was truly in shock and felt completely overwhelmed — worried about so many things. Now however, I am super excited!!! I still have moments of worry and concern. But really looking forward to being a father,” Pistorius said. “Joanna is very excited and incredibly thankful. She sometimes still says it feels a bit unreal.”

He acknowledged communicating with a baby will be a challenge, but he’s already begun reading to his unborn child using his computerized “voice.” Joanna, he said, is already acting like a “mom” and trying to invent ways for Martin to interact with their child.

"We are also learning baby sign language so that it will be easier and quicker for me to communicate with him,” Pistorius said.

No challenge with a little one could ever be as tough as what he’s already been through.

“It was terrifying at times,” he recalled about his earlier years being trapped inside a body with no way to communicate. “What really got to me was the complete and utter powerlessness. Every single aspect of your life is controlled and determined by someone else. They decided where you are, what you eat, whether you sit or lie down, in what position you lie in, everything.”

He most certainly won’t be playing any “Barney & Friends” episodes for his young son. Pistorius spent years in a care center where he was often positioned in front of the TV and watched hours of the children’s show playing over and over again. The singing purple dinosaur still triggers painful memories.

“I can't listen to or watch Barney now… Barney played, I guess you could say, a tormenting role in my life,” he said. “For years, I would get flashbacks and have nightmares.”

It was a new worker at his care center in 2001 who eventually realized Pistorius was there.

He had to relearn everything, from reading and socializing, to making choices for himself. With new stimulation and experiences, his body grew stronger and he began to regain movement. He was able to push himself in his wheelchair and learned to drive a specially-equipped car that he operates with his hands.

Pistorius is still working as a freelance web designer and doing other IT consulting and public speaking. Joanna is a social worker. He has always tried to focus more on his future than his past.

Right now, the next step is finding a new apartment for his growing family.

“Life can change so quickly, too, that it is good to appreciate what you have in this moment,” Pistorius said in 2016, adding this advice: “Treat everyone with kindness, dignity, compassion and respect — irrespective of whether you think they understand or not. Never underestimate the power of the mind, the importance of love and faith, and never stop dreaming.”