London mom Sam Carlisle shares her experience raising a daughter with an extremely rare genetic disorder

By Sam Carlisle
November 17, 2017 09:05 AM
Sam Carlisle and her daughter, Elvi
Sam Carlisle

London mother of two, Sam Carlisle, shares her moving experience raising a daughter with an extremely rare genetic disorder, and reveals how the new film, Wonder, has inspired her and her family.

I cried before the opening scene of the new movie, Wonder (staring Julia Roberts and Jacob Tremblay), had even begun.

By the time the Oscar-winning actress appeared 30 seconds in, I was worried my big, fat tears would flood the theatre.

The film is based on the children’s bestselling novel of the same name. Author R.J. Palacio’s book is so important to my family I was terrified the movie wouldn’t do it justice. That’s why I cried.

The tears continued throughout, not because director Stephen Chbosky and his A-list cast hadn’t managed to capture the essence of this unique, life-changing book but because, as each scene unfolded, I realized they had.

Roberts plays Isabel, the mom of Auggie, a child with a craniofacial disorder (in interviews, Palacio has said his condition is based on the genetic disorder Treacher Collins). His face is so disfigured by his condition he wears a toy astronaut helmet to hide behind every time he steps outside. When he has to remove the helmet and other kids stare, he mentally retreats into a fantasy Star Wars world.

Julia Roberts and Jacob Tremblay in Wonder.
Dale Robinette

I, too, am the mom of a child with a rare genetic disorder. My daughter Elvi has RCDP (rhizomelic chondrodysplasia punctata). The condition is so rare, less than 50 American children are affected.

To me, Elvi is a beautiful 16-year-old. I don’t see what strangers see when they watch her rolling along in her wheelchair. They stare at the drool on her chin, her different length arms, her obvious learning difficulties. Worse, sometimes they quickly and awkwardly look away.

Sam Carlisle

I want to say to Elvi, as Roberts’ character says to Auggie (played beautifully by Tremblay): “You are not ugly, and anyone who cares to know you will see that.”

The problem is getting people to care to know Elvi. Having a child who is disabled is one of the most isolating experiences a parent can go through. No one quite understands how tough it can be enduring endless hospital visits and drawing on the mental and physical strength you need to care for a child who can’t walk or get dressed or say more than 50 words.

Dreams you had for that child burst like bubbles. Friends you’ve had for years melt away.

In Elvi’s case, I have no idea how long she will live. Few children with RCDP reach their third birthday, even less make it to adulthood. She is indeed a wonder.

Elvi as a young child
Sam Carlisle

So when I noticed the iconic cover of R.J. Palacio’s novel in our local bookstore three years ago, and started turning the pages, my heart leapt.

Here was a passionately written novel about our life. Auggie is facing a world that doesn’t know how to face him back. That is true of most disabled children, whether they have facial or physical differences.

Written initially from Auggie’s perspective, it describes him starting school for the first time age 10. He had been previously taught by his mom at home.

The anxiety and over-protectiveness he describes in his mom sounds completely like mine. If tiger moms are the ones who go into battle for their kids at the drop of a piece of Lego, meet Momzilla, mothers of disabled children who are continuously fighting for their children’s rights and are always on the look out for bullies or starers — whatever their age.

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The dark humor you need to cope as a family is one of the most well-written aspects of the book and translates on screen, particularly in Auggie’s relationship with his dad, Nate (Owen Wilson). Nate’s advice on Auggie’s first day of school is: “Two rules. Only raise you hand once in class no matter how many answers you know, except for science. Crush them.”

And then there is Via, Auggie’s older sister, played by Izabela Vidoovic.

Siblings of disabled children are special themselves. However carefully parents try to pay them as much attention as their sick brother or sister, they live their lives coming second.

When Elvi’s brother, Sonny, and I first read Wonder and the narration switched to Via’s voice, he stopped at her first line: “August is the Sun. Me and Mom and Dad are planets orbiting the Sun. The rest of our family and friends are asteroids and comets floating around the planets orbiting the Sun.”

Sonny, then age 8, said: “Mom, that’s just like our family.”

Sonny and Elvi
Sam Carlisle

For that entire school year we gave a copy of Wonder to his classmates as a birthday present. It helped them understand Elvi’s disability and the sacrifices her brother has to make every day.

The message of the book is how small acts of kindness can change the world one act at a time.

When I was at a particularly low point last year, I posted on Facebook about how hard I was finding it to cope. Family friends of ours, who hadn’t had that much to do with Elvi in the past, stepped forward to say they would take her out for a walk, giving us some time to relax and concentrate on her brother. They now do that once a month and we all gain from it.

People sometimes ask what they can do to help our family. I would say, read Wonder, go see the movie, then remember to treat children who are disabled as the incredible human beings they are. Then once a day, in Auggie and Elvi’s name, choose kind.

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