Mum's awareness campaign to change attitudes to Curtis
PUBLISHED: 08:00 30 September 2012
EVER since birth, the thing that makes Curtis different to other children has been obvious - holes in his lip and mouth, formed during pregnancy alongside twin sister Codie.
This has meant Curtis Hanny’s childhood has been difficult at times - but now mum Nicole Hanny is determined to make more people aware of her 11-year-old son’s condition.
Cleft lip and palate syndrome affects one in 700 children born in the UK, although not Curtis’ twin.
It has seen Curtis, of Longridge Way, Weston Village, undergo 11 operations since birth, with more still to come.
Nicole says the most challenging thing about bringing up the youngster has been dealing with people who have no awareness of the condition and don’t understand – particularly Curtis’ young school friends, who damage his self-confidence with their lack of sensitivity.
Nicole, a mother of four, said: “Most people are understanding of it. It’s more the kids really that call him names, but the parents are usually very good. If you knock on their door and say ‘don’t call him that’, they understand.
“Flat nose is the first thing they call him. It’s not his nose that has the condition, but the shape of his nose because of the cleft is the first thing they comment on.
“If somebody’s got a flat nose and scarring I want people to think they have a cleft lip and palate, nothing more. I want people to understand that.
“Call him a big gob, call him stinky, but don’t call him flat nose.”
Curtis agrees: “Sometimes I feel a bit nervous at school, other times I feel okay.
“I just want everyone to know what it is, so people don’t come up and say ‘why is your nose like that?’”
Cleft lip and cleft palate problems form during pregnancy, when the face fails to fully develop – although the exact cause is still unknown.
According to the website of the Cleft Lip and Palate Association (CLAPA): “A cleft lip is a condition that creates an opening in the upper lip between the mouth and nose.
“It looks as though there is a split in the lip. It can range from a slight notch to complete separation in one or both sides of the lip extending up and into the nose.
“A cleft palate occurs when the roof of the mouth has not joined completely. A cleft palate can range from just an opening at the back of the soft palate to a nearly complete separation of the roof of the mouth.”
The condition can take many forms – Curtis has bilateral cleft lip and cleft palate, meaning it occurs on both sides of his mouth.
Nicole says she is proud of how brave Curtis has been in dealing with his condition and the resulting operations – five for his cleft and six for related problems in his ears, totalling 11.
It is a fact Nicole has had to adjust to. She said: “I don’t worry about his operations any more. I used to be scared, but I’m used to it now.
“I just think, that if he hadn’t had them, he would have been left with facial disfigurement.
“But I still would have loved him.”
But the condition has had a knock-on effect on Curtis’ self-confidence.
Nicole added: “He gets angry a lot and sometimes he gets frustrated and he doesn’t think he can do things. It has made him have no confidence, he gets depressed and he doesn’t think he has friends.
“At school he is quite quiet and shy yet at home he’s loud and bubbly.
“I tell him to ignore people who don’t understand. I tell him to ignore people who don’t know him, and I remind him of all the lovely things about him. He’s got me, he’s got his sister, he’s got his friends.”
Raising awareness is key, Nicole says, and ensuring as many people as possible understand the condition – for other sufferers as much as Curtis, which is why the pair are fundraising in Weston this weekend for CLAPA, complete with T-shirts provided by the charity.
Nicole said: “I would stop the operations if I could and I would make more people aware of his condition, but I wouldn’t change Curtis in a million years.
“He’s a perfectly able child, just because he looks different doesn’t mean he can’t do normal things. Some people seem to think it does.
“The cleft lip is part of who he is. I wouldn’t change it. Curtis is Curtis and if he didn’t have his cleft lip he wouldn’t be who he is now.
“I am proud of how he has dealt with everything, he is so brave and well adjusted.
“Everyone is different in this world. I just want to change people’s attitudes.”
To donate to CLAPA, go to www.CLAPA.com/donate