Meet the 14-year-old girl who has a unique condition meaning she weighs just two stone and wears clothes of a six-year-old.
Dannia Shabbir has a chromosome disorder which was unheard of in girls when she was born and had only been reported in four boys worldwide.
It is so rare it does not have a name and doctors are unable to predict how it will continue to affect her as she grows up.
So far it has severely restricted her growth, she cannot talk or walk and she has the care needs of a baby.
But her mum Aleisha Almahari, 51, says Dannia is “happy and content” and always smiling – and she loves to see the delight on her face when she is fed ice cream.
“Doctors told me they had never seen a baby girl born with this condition who had survived,” she said.
“Not only is her condition rare, but there is no other Dannia.
“She is such a placid child, she’s easy to look after. But it’s a full time job – it’s like having a baby.”
When Aleisha fell pregnant in 2002 there were no concerns about the baby’s health until Dannia was born by elective caesarean section at 39 weeks.
“The doctors knew straight away that something wasn’t right,” she said. “She was cold and tiny and had low blood sugar.
“Things were not quite adding up. It was all quite overwhelming, they tested my blood and her father’s.
“Within a day we had been told it was serious.”
It was discovered that Dannia had a chromosome abnormality, where part of an ‘inactive’ chromosome had broken off and joined onto another ‘active’ one, chromosome 20.
“At the time of her birth, there were only four cases reported, and all were boys,” Aleisha said.
“They never seen it before in a baby girl and all sorts of things went through my mind.
“Initially I almost felt like I had lost the baby – all the things you think will happen when they are of a certain age seem like they won’t.
“I felt so confused – I didn’t know what to do.
“I didn’t know if she was going to be completely lifeless.”
The remarkable little girl has been closely monitored by genetics specialists at Southampton Hospital, Hants., all her life.
Because of the rare nature of the condition, they do not know if the diagnosis will affect her lifespan – or if she will carry on developing.
Her mum said: “She hasn’t reached puberty and doctors don’t know if she will.
“She depends on me for absolutely everything. She can only sit or lie there.
“Dannia doesn’t go to school, I don’t want her to because I don’t think they could care for her.
“She’s as good as gold – she doesn’t have tantrums, she’s really easy going.
“She’s got all her teeth although she was quite slow to get them.
“That doesn’t mean she can chew, as that comes from the brain.”
Despite her age, Dannia has not reached puberty and is still growing very slowly.
After being diagnosed with an ‘unsafe swallow’ Dannia is restricted in what she can eat, and was recently operated on to have a tube fitted in her stomach.
But her mum sometimes gives her a little taste of ice cream or soup, as a treat.
Aleisha, who lives near Southampton, added: “Eating in front of her breaks my heart – she watches you like a puppy.
“She will just stare at you and watch it going into your mouth. It makes me feel really guilty.
“We try not to eat in front of her – I hate it. If I am having soup I will give her a little bit.”
“We don’t want her to lose her sense of taste or sensation on her tongue.
“She loves ice cream and will have a big spoonful, but she can’t hold a spoon.
“If you’re having a cappuccino she won’t take her eyes off you.
“She loves a frappuccino or anything similar to ice cream.”
Dannia has a special buggy to travel in, and a bed similar to those used in hospitals which can be adjusted to prop her upright.
Her mum dreams of being able to take her swimming, but all pools are too cold for Dannia, whose body temperature, at 36 degrees, is lower than usual.
Aleisha takes her youngest daughter away for holidays in Dubai whenever she gets a chance, and Dannia spends most of the 11-hour flight snoozing on her mum’s lap.
“She loves to snuggle up and hold hands,” Aleisha said. “She’s not keen on toys, she loves people and is very sociable.
“We used to read to her but now make up stories instead.
“She likes music but what she likes best is if you dance around for her.”
Strangers sometimes stare at Dannia in the street, but since having a feeding tube removed from her face, she is getting less attention.
“It is a lot better,” Aleisha said. “It was a problem with people staring at her, even little children.
“She just smiles when children approach her and reaches out her hand. She’s a sweet little girl.”
