The mum of a three-year-old girl whose skull bones are fused together says the tot is stared at constantly in public – and one cruel stranger even said she looks like an ALIEN.
Little Ryley Nazario has Pfeiffer Syndrome, a rare genetic disorder which causes facial deformities and affects the shape of the head.
Her mum Vanessa Nazario, 39, said ever since Ryley was born she has attracted attention, with strangers offering pity or making nasty comments.
In spite of it all she says the brave tot is constantly grinning – a trait that’s earned her the affectionate nickname ‘Smiley Ryley’.
Vanessa, from Rockland, New York, said: “A few weeks ago, a kid came up to me and said Ryley looked like an alien, which was obviously so hurtful.
“I just asked him how he would feel if someone said that he looked like an alien and explained that Ryley is not any different to anyone else.
“It is heart-wrenching to cope with that on a daily basis though.
“Our family deals with the stares every day. Kids are kids and I understand that they are curious and that they are innocent. But it’s hard to deal with.
“Adults are the worst though. It’s not just staring, it’s the comments.
“People always say to me ‘Oh my God, the poor thing’ or they approach you shocked and you just want to tell them ‘I don’t need you to feel sorry for me’.
“Ryley’s fine, she’s amazing. She doesn’t need anyone to feel sorry for her and she certainly doesn’t need the stares.”
Ryley was diagnosed with Pfeiffer Syndrome, which affects just one in 150,000 children, at birth.
It is a disorder caused by a genetic mutation and causes bones to grow abnormally. In Ryley’s case, her facial features are compressed, which makes it difficult to breathe.
The three-year-old lives with a trach tube in her neck, which helps her breathe without difficulty. Because of her condition, she also lives with scoliosis.
The toddler has already been through more than ten surgeries in her short life.
Vanessa, a credentialing coordinator, said she and her husband Jose, 43, who is vice president of an IT company, are preparing her for the most intense operation so far.
When she turns five, Ryley will undergo mid-face surgery in the Children’s Hospital of Philadelphia.
This op will move the bones of her face forward, which will allow her to breathe without a trach tube and also give her facial characteristics she currently does not have.
“They say the surgery can also be quite traumatic for parents because it changes her look, and you are suddenly left wondering where your little baby is gone,” Vanessa said.
“Because it’s such a big operation, we’ve already started preparing her for it. We talk about it a lot.”
The mum-of-one added that her family were particularly impacted by the release of the movie Wonder, which focuses on the bravery of a child living with a similar condition.
In the movie, Jacob Trembley portrays the experience of 11-year-old August Pullman and the challenges he faces when he enters mainstream school for the first time in his life.
“We all went and saw Wonder and it as so hard not to be an emotional mess the whole way through, especially because our story is so similar.”
“It was very emotional to see how children can be, but also amazing to see how resilient they can be also.
“It made me so happy to see that schools are reading Wonder and parents are taking their children to see the movie because it’s such an important lesson.”
She added that she resorted to creating a brochure about the youngster’s condition to help people understand it better, which she says she gives to children in Ryley’s life.
Despite the challenges she faces, Vanessa said her daughter’s sparkling personality has garnered her the nickname ‘Smiley’ Ryley.
“She’s just the happiest little girl. She is fierce, fierce, fierce. She’s always smiling and dancing. As a mum, you just have to try your best and let them do their thing.”
