My son is a Wonder like Auggie – look past the deformities and see the cute little boy with a great character

Wonder is the moving film starring Julia Roberts as the mother of a boy with Treacher-Collins syndrome, which causes facial deformities – and Victoria Macklin’s son Ryan has the same condition

By Janet Tansley

Like Auggie in the Hollywood film Wonder , Victoria Macklin knows what it is like to face the world looking different, but she did it with determination and humour.

 

Now, she wants to help her 18-month-old son Ryan to do the same – rather than him hiding under a space helmet like young Auggie, played by Jacob Tremblay in the hit film also starring Julia Roberts and Owen Wilson.

 

Victoria, Ryan and fictional character Auggie all suffer from Treacher-Collins syndrome , a congenital disorder causing craniofacial deformities, affecting the ears, eyes, cheekbones and jaw.

 

Victoria had to overcome taunts and cruel behaviour growing up, but hopes things will different for her son.

She says: “Of course I am fearful for him, for how people will treat him and how society will greet him; how he will feel when he realises he is different, because that can take happiness away.

“But I hope things can be different for Ryan, that people are more accepting and I can help him to be positive.”

Victoria was desperate to be a mum but knew her baby would have a 50 per cent chance of inheriting the congenital disorder

She adds: “When I was considering having Ryan, knowing there was a 50% chance of him having Treacher-Collins, my friends said, ‘but look at you, it hasn’t stopped you being happy and doing well’.

 

“In the film Wonder, August wears a space helmet so people can’t see his face. I want people to see Ryan’s face but to see past the deformities and just see him.”

 

While TCS is a genetic condition that can be inherited, with a 50% chance of passing it on, Victoria, 44, was the first person in her family to have it.

 

“When I was born, they didn’t know what it was,” says the IT project manager, “but a doctor came in and thought he recognised what it was. I was just whisked away, my parents not knowing what was happening.

 

“It’s easier now to find out about things with the internet and support groups on Facebook. For my mum and dad, there was nothing.”

 

Victoria was born with a cleft palate, sunken cheeks, a small jaw and no chin. “I had one outer ear,” she says.

But the response to her was very different from the one she is getting with Ryan. She says: “My mum has said people’s reactions were very different.

 

“People would see there was something wrong, and they wouldn’t approach her or go up to her.

With Ryan they notice something is different but they will ask why, or they will comment on other things like his lovely hair. And although he looks different because he has Treacher-Collins, they see a happy little boy who is very cute, with a great little character. People will come up and say hello and get a smile.

“My mum said people avoided her. Hopefully things will be better for Ryan.”

One thing she hopes will be better is Ryan’s experience at school. Victoria remembers arriving for her first day.

 

As a four-year-old she walked into the playground and was immediately surrounded by her new classmates.

 

“They just stood around me, in a circle, staring at me,” she says. “They didn’t say anything. They just stared. I remember feeling uncomfortable. I have memories of other times at school when people weren’t very nice to me. On one occasion my hearing aid was ripped out and, of course there were verbal taunts, and people sat deliberately with their backs to me so they didn’t have to look at me. That was hurtful.”

 

The facial bones of people with TCS do not develop properly, so typical features include downward-slanting eyes, a small lower jaw, hearing loss and malformed or absent ears. Physical features can cause problems with breathing, hearing and feeding.

 

It can make life unimaginably difficult. Jono Lancaster, of Normanton, West Yorks, was abandoned at birth because of his TCS but has gone on to become a motivational speaker, inspiring millions with his attitude towards life.

 

This path of hope, determination and humour, is one Victoria says she will strive to ensure Ryan follows, too.

 

She often felt lonely “because it wasn’t cool to hang out with me”. But she found a strategy for dealing with the taunts.

 

Victoria says: “Secondary school wasn’t bad, I had some friends, and though some people weren’t nice I was better able to ignore them.

 

“I had one line I used, like when one boy was being nasty in front of his mates about the way I looked. I said, ‘Well, I have a genetic syndrome, what’s your excuse?’ His mates laughed and he walked away. I would never let them see that what they were trying to do had worked, that they had hurt me.

Victoria says people turned their back on her so they didn’t have to see her face

“I would always come back with a witty quip, I wouldn’t let them win.

 

“At university no one was nasty, no one stared. That was probably the first time, the first place, I had known it.”

 

Victoria gained a first-class honours degree in computer science and becoming a programmer then a project manager.

She now works for Marks & Spencer, and has found happiness in her personal life, too. She has been married twice though, shockingly, her first husband’s parents wanted nothing to do with her.

 

She says: “They saw me once and then banned me from their house from then on. My ex-husband said he hated to have to tell me that his mum and dad had reacted really badly and told him they didn’t want to see me again.

“We were together for 12 years and married for six, and they never did see me again. I admired the way he dealt with it and stood by me.

 

“Funnily enough, I never worried about relationships and boyfriends, at least no more than the average teenager. I worried a bit but I was more interested in getting good grades. I had a boyfriend at 16, I met my first husband at school, getting together just after A-levels, and my husband, Ryan’s dad, at work.

 

“Physically I have always tried to make sure I look my best, that I make the most of what I have. What I can control, I do. I keep myself nice and slim, and I have long thick hair that I look after and keep nice and I wear clothes that flatter me.”

Victoria and Ryan have the same condition as Auggie in new movie Wonder
Victoria, from Cheshunt in Hertfordshire, had always wanted children ‘for as long as I can remember’ but not surprisingly she debated whether it was right to bring a child into the world with TCS, or the

risk of it. She and her husband went down the route of IVF to try to avoid any risk of a child being born with the condition.

 

“I had pre-implantation diagnosis and waited 14 years for funding so the chances of it working were greatly reduced. I had three rounds of egg collection and three cycles of IVF. Of 13 embryos, eight had Treacher Collins.

 

“Only two were suitable for implantation and both were implanted, but I miscarried after six weeks. I thought we had done it, I thought that we had been successful, and I was devastated.

 

“I had another two miscarriages after that and then I had Ryan. He was born after the IVF treatment had finished and we had decided to try and conceive naturally. Of course we considered what might happen and after trying so hard to ensure I had a child without the syndrome, what made me consider taking the risk?

 

“Partly it was selfish I suppose, I wanted children, I wanted to be a mum. And I had done everything I could to try to prevent it, even it had meant waiting all those years.

Victoria however is determined that people see her son for the ‘happy little boy’ he is

“But I also thought that if I had child with Treacher Collins he or she would have the same, wonderful support my parents gave me as well as my own personal experience.

 

“I accepted that I would deal with it the best I could, that I would give, ultimately Ryan, everything he would need and get him through it. Friends told me I was okay and had coped – why wouldn’t my child?

“I knew at 12 weeks after a scan that Ryan had Treacher Collins, and I’m glad that I knew early on so by the time he was born I was used to the idea.”

 

Ryan was born 10 weeks early, weighing 3lb 6oz, and spent the first five months of his life in hospital. He had a cleft palate, the typical TCS facial features and no outer ears. He stopped breathing a few times in hospital because of his under-developed jaw and had to have a tracheostomy to help with his breathing, and he suffered from terrible reflux and is now fed continuously into the intestine by a feeding pump.

 

“I sometimes envied other mums being able to spend quality time with their little ones while we were stuck in hospital but, luckily, Ryan was such a happy, content chap, that we still managed to have fun. And getting home with him after so long was an amazing feeling.

 

“For 18 months he has shown what a little fighter he is. He is pretty smart – and he has shown that he is a happy little boy, a content little boy. And I hope that continues.

 

“I have never wanted people to feel sorry for me. I want people to accept me and see me as someone who has succeeded in life, not least for now bringing up a wonderful little boy.”

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