‘I’ve always known I’m different. I like to think I’m strong’
He was born with Treacher Collins, the syndrome featured in the Julia Roberts film ‘Wonder’. Now, this inspirational teenage boy and his mother tell their incredible story …
By the time Magda and Russel Newman got to the hospital delivery room on February 7, 2004, Magda had already laboured through the night. Hers had been a healthy pregnancy – at the six-month ultrasound, her doctor noted only that the baby’s “nose looks big” – and the 24-year-old was excited to deliver her first child. Magda recalls Russel, then 35, cheering her on: “You’ve got this! I see the head!” Then came a terrifying silence. Magda saw Russel grab his hair as the delivery team hustled the newborn to an adjacent alcove. The stunned stillness was broken by Russel’s wails of, “Oh God, oh my God!” It was then that Magda caught her first glimpse of Nathaniel, with his cone-shaped head, swollen eyes and misshapen ear. “No-one would show him to me,” she writes in her new memoir, Normal: A Mother and Her Beautiful Son.
“Then I saw his profile … Something
was very wrong.” She asked her doctor: “Did I deliver an alien?”
Fifteen years later, Magda cringes at those words. But Nathaniel takes them in typical teenage stride. “Yeah … my own mother thought I was an alien. Nice!” the second year high school student writes in the companion memoir for young readers, titled Normal: One Kid’s Extraordinary Journey.
Diagnosed with a severe case of Treacher Collins syndrome – a congenital disorder in which underdeveloped bones in the face and jaw cause sloped eyes, missing or malformed ears and blocked airways, but no mental disabilities – Nathaniel could easily be the real-life Auggie Pullman of R.J. Palacio’s 2012 novel Wonder, later turned into a movie. But the author met the Newmans only after she hit the bestseller list and her viral “Choose Kind” movement transformed how the world saw children with facial differences. “It spread a lot of understanding,” Nathaniel says of the book, which became a 2017 film. It was Palacio who encouraged Magda – a former concert pianist – and Nathaniel to write their story. “What I love is there’s nothing heroic; they’re just living their lives,” says Palacio. “Magda and Russel are committed to giving Nathaniel a normal life without feeling sorry for themselves That’s what makes them wonders.”
‘Normal’ is a tricky concept for Nathaniel, who has endured nearly 70 surgeries to allow him to breathe, hear, swallow and speak.
At his home in Sammamish, Washington, with his brother, Jacob, 13, he says Treacher Collins, which affects one in 50,000, is what normal is to him. “I’ve always known I was different. I like to think I’m strong. If we were all normal, we’d all have to be the same.” Such wisdom is something Magda and Russel couldn’t even imagine back when they were struggling through each day. At 6 weeks old, Nathaniel nearly died from respiratory failure. An emergency tracheotomy installed a stoma in his throat that would require constant monitoring and limit his activity (no swimming or showering alone) for the next 13 years. During a surgery at age 2 to open his airway, the surgeon accidentally drilled into Nathaniel’s brain.
When he was 12, he became the second child to undergo a groundbreaking ‘halo’ surgery that sewed his eyes and jaw shut, broke almost every bone in his face, and installed rods with screws that, for three months, the Newmans would tighten daily (“barbaric”, Magda calls it) to realign his jaw and open his airway so the trach could come out. Following the surgery, Nathaniel’s heart stopped for 22 seconds. Amid all this, the couple had genetic counselling and prenatal testing and added son Jacob to the family. They also moved seven times to accommodate Russel’s work for insurance companies – the only way they could chip away at Nathaniel’s medical bills, which top $2.37 million and counting.
Unthinkably, Magda, who stayed home to care for Nathaniel full-time, twice battled cancer during this time, including stage four Hodgkin’s lymphoma. She recalls how, after accepting that “God picked me to raise this child,” she railed against him: “Where are you? Are you kidding me?” Now cancer-free, she and Russel credit their son with getting them through the crises.
“Nathaniel never said, ‘Why me?’” Russel says, “so how could we?”
“God picked me to raise this child”
— Magda
Today, Nathaniel is free of his trach, able to trampoline and roll around with the family’s four dogs. He’s working on his black belt in taekwondo and hopes to be a veterinarian. “I love how happy animals get when you care for them,” he says.
His parents have put off thinking ahead to the prospect of him wanting to start his own family one day. He has a 50 per cent chance of passing on Treacher Collins, though genetic testing and IVF could mitigate that risk. “Whether or not he has children – and how – is a moral decision we will leave to him,” says Magda.
Right now they are just savouring normal. “What we look like on the outside is a shell. True beauty comes from the way we treat others,” Magda says. “I feel so lucky. We have it all.” •