Brave eight-year-old defends his baby sister after ultra-rare condition leaves strangers saying she has alien-like features
A brave eight year old is defending his baby sister against strangers’ cruel taunts after her ultra-rare condition leaves strangers saying she has alien-like features.
Protective Dominic Carter, from Trowbridge, Wiltshire, has been battling vicious comments about his little sister who has had craniofrontonasal dysplasia since she was born in 2014.
The rare condition means that Brianne, now 17-months-old, has eyes that are far spaced apart on either side of her head and a pronounced forehead – due to parts of the skull fusing prematurely.
According to a study released last month only three other cases of this condition are known about worldwide.
The adorable baby was also born with a severe cleft lip and problems with her pallet that left a large hole beneath her nose.
Cruel comments from strangers have left mum-of-three Stephanie, 31, worried to leave the house, but fortunately big brother Dominic has been standing up to the bullies.
Dominic boldly challenges their comments and insists he has a beautiful sister.
Most shockingly, Brianne has been branded an ‘alien’ because of her different facial features but that doesn’t stop Dominic showering her in kisses and hugs – the pair are inseparable.
Two months ago Brianne had the second of two operations to stich her lip and nose back to her mouth, which now means she can eat properly for the first time.
Stephanie, an elderly care worker, said: “I’m really proud of Dominic and his sister Georgia for defending their little sister, they are such incredible inspirations for Brianne.
“He’s really defensive bless him and has been defending her after some comments about the way she looks.
“People have told Dominic that she looked like an alien which is a horrible thing to say, but he’s been a protective older brother and told them about her condition instead.
“More recently, since surgery to her lip, someone asked if she thought her scar was a nosebleed and Dominic said straight away ‘That’s her cleft scar stupid’ – he’s always to the point about it and unafraid.
“At first I didn’t tell many people about Brianne’s condition because it was quite sensitive and with everyone asking what was wrong with her all of the time.
“Some days I just wanted to stay inside because I didn’t want deal with people’s stares or comments.
“However now we’re all a lot stronger and know that we have no reason to hide and nor does Brianne, we’re very proud of her.
“In our eyes Brianne is beautiful and although she looks different, it’s only cosmetic and it can be changed over time.
“When she was born she did look different to my other children – her eyes were very wide apart and to the sides of her face.
“She also had a cleft, which was quite wide and her head was an unusual shape, it was shocking but I would have loved her no matter what she looked like.
“It’s all due to a very rare condition called craniofrontonasal dysplasia that geneticists told is very rare and many doctors haven’t even heard of the condition.
“Since then she’s had two surgeries to help her to eat properly and despite going through all of this she’s recovered from operations quickly and has become a right little madam.”
At 20 weeks pregnant scans revealed that Brianne would be born with a severe cleft lip and despite being offered an abortion Stephanie and partner Antony, 31, turned it down.
It wasn’t until Brianne was three months old that doctors diagnosed her with craniofrontonasal dysplasia – caused by a mutation to the ephrinB1 gene that controls tissue and bone formation.
Stephanie said: “We were told we could abort the pregnancy but for a hole in her lip we didn’t think it was right as she could have surgery and there would be no damage to her brain.
“I was quite upset and shocked by it all, I wasn’t sure how I expected her to look but I didn’t know her cleft would be as large as it was.”
Since then the family have suffered some cruel taunts and stares while out in public, but despite that they’re unashamed of Brianne.
Stephanie added: “Sometimes I have to put myself between Brianne and the people who stare at her, I don’t like her just being gawped at and neither does her brother or sister.
“When Brianne’s older I don’t want her to have to hide and don’t want her to be bullied, however she’s already a bit of a bossy madam so I’m sure she’ll be able to defend herself.”
Now recovering after her second operation, Brianne is set for scans to determine whether an operation will be carried out to fix the shape of her skull.
Stephanie said: “So far I’m relieved her surgery has gone well because it can be very difficult for girls growing up and the last thing I would want is for her to feel embarrassed.
“We know there may be more operations on the way but she’s a real character and a very strong little girl so I know she can defy anything.”
According to craniofacial charity Headlines: “Craniofrontonasal Dysplasia is one of the rare craniosynostosis syndromes.
“There is no accurate measurement of its birth frequency, but an estimate derived from experience over 10 years at the Oxford Craniofacial unit put the figure very approximately at 1 in 120,000.
“It is [caused] because of a combination of where the craniofrontonasal syndrome gene is located on our chromosomes, and the way that the gene works in controlling the development of the body.
“The condition is highly unusual in that girls are more severely affected than boys and this has long puzzled doctors.”
For more info visit www.headlines.org.uk or call the helpline 01454850557.
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