BlinkSync

Nathaniel Newman’s story is one of incredible strength and resilience in the face of seemingly insurmountable obstacles. But despite the countless hurdles he encountered, with the unwavering support of his family and his own indomitable spirit, he refused to let his condition define him. His story can serve as a powerful reminder that with the love of our friends and family, we can overcome any challenge that life throws our way.

A painful discovery

For new parents, the birth of a child is supposed to be a joyous occasion. Unfortunately for Magda and Russel Newman, the reality was far from that. Magda’s long and difficult labor ended in shock when, instead of being handed her newborn, she was met with horrified expressions from the medical team.

Magda Newman’s 17-hour labor ended in a traumatic experience when doctors failed to communicate her newborn’s condition. The lack of information left her fearing the worst and even thinking that her baby might have passed away. This highlights the importance of clear communication and transparency between healthcare providers and patients, as it can ease anxiety and prevent trauma.

“What’s going on? I want to see the baby,” Magda asked the doctors one more time. However, they wouldn’t give her an answer as they kept examining their baby. “I think they were scared at first. Because he had no cheekbones and no upper or lower eyelids, just completely disfigured,” the dad said.

Eventually, Russell was taken aside and presented with a textbook that contained a page featuring Treacher Collins syndrome. The page included a picture of a teenager affected by that condition. “I remember thinking, ‘That’s going to be my kid?’ It was surreal.”

It was not easy for either of them to come to terms with the news, and when Magda finally saw her little boy, all she could remember was, “Something was very wrong. Did I deliver an alien?”

Initially, they struggled to accept it and endured a long battle.

The unexpected news came as a shock to Magda and Russel Newman, causing their newborn boy to be placed in the neonatal intensive care unit (NICU) for the first month of his life. The anxious parents had to wait for weeks before they could hold their baby, which was a difficult and emotional experience. Finally, one evening, they were able to hold their son and come to terms with his condition.

“We decided he’s going to be beautiful not because of his appearance but because of his personality,” Magda said. “He’s going to be a beautiful person.” Following their epiphany, the couple hastily made their way to the hospital to visit their beloved son. “We held Nathaniel for the first time. It was awesome. And then the journey started.”

Adapting to life with a baby diagnosed with Treacher Collins can be a daunting task, as Magda and Russell Newman learned firsthand. Despite their determination and positive outlook, the heart-wrenching reality of their situation left Magda in tears, “I almost cried every day. Every single time I looked at him, I could not believe it was my child.”

Nathaniel required extensive adjustments to be made to accommodate his physical and medical needs, including breathing and eating difficulties. But besides these challenges, his cognitive function was unaffected, and he was as capable as any other child.

He underwent over 10 surgeries in his first year, transforming his life, but not without sacrifice. His parents prioritized improving his quality of life over cosmetic changes but faced insensitive remarks from those who didn’t understand the choices they had to make. Nathaniel never received the praise he deserved because “he did not look like a person.”

Growing up, the boy had to deal with a lot of judgment.

Over the years, the couple expanded their family and after consulting with medical professionals, they welcomed a second son, Jacob. Nathaniel and Jacob became inseparable, but Nathaniel soon became aware of his differences. He couldn’t help but notice the stares and screams he received from people, which made him feel self-conscious.

Children were afraid of his appearance, and one cruel kid even called him a “monster.” Nathaniel’s heart ached as he struggled to understand why he was so different and why it caused so much pain.
“I realized they don’t do it to anybody else, so I was different,” Nathaniel said. “I was insulted and kids don’t really think about what they’re saying.”

Despite the hurtful words and stares, Nathaniel’s family always shielded him from the negativity. His younger brother, in particular, was fiercely protective of him. “Growing up with a brother with TCS forced me to be mature. I had to protect Nathaniel when we were younger. I was his bodyguard.”

How one movie changed his whole perception

In 2012, the book Wonder was published, a book that holds a special place in Nathaniel’s heart. It tells the story of a girl with facial differences and the challenges she faces in a society that struggles with acceptance. The book’s impact inspired Nathaniel and Magda to create 2 similar books in 2020.

Inspired by their challenging journey, Magda wrote Normal: A Mother and Her Beautiful Son, where she narrates their story. Likewise, Nathaniel wrote his own book titled Normal: One Kid’s Extraordinary Journey, which also narrates his story, but from his perspective.

“I write in my book that, ‘I’m not normal, and neither are you,’” he says. “And what I mean is that if we were all normal, we’d all have to be the same.”

In 2017, Wonder was adapted into a movie, and it marked a life-changing moment for Nathaniel. The film transformed people’s perception of him, making them more compassionate and accepting.

“I was 8 when it came out, and it changed everything. It spread a lot of light on facial differences. People became more understanding,” Nathaniel claims. “Now, in school, I’m treated like everyone else. People are really nice.”

Nathaniel Newman is now thriving thanks to numerous surgeries that have allowed him to participate in activities that were once out of reach. His story is a true example of how the unwavering support of family can help overcome even the toughest of obstacles. As noted by Magda, “Don’t let your life circumstances or how others perceive you determine how you choose to live your life. ‘Normal’ is how you choose to define it.”

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