Hitting new heights

By Tracey Sparling

ZOE Newson has dwarfism, but she really doesn't want to be any taller. She's decided against operations to lengthen her arms and legs. Features editor TRACEY SPARLING asks what it's like to be a small person in a world designed for tall people.

WHEN Zoe Newson was growing up, she used to climb.

Once she clambered up an open chest of drawers, to reach the television which her older brothers had placed out of her reach, and changed the channel.

Why? Because she is a little person. A dwarf.

Zoe doesn't mind these words, which can offend others with her condition, which is called achondroplasia and is the most common form of dwarfism.

The 14-year-old has a laid-back attitude to life, born from an acceptance of her height from an early age.

Her family haven't had a tape measure out in years and don't know whether she is still growing. Her mum Helen looks to dad Ricky for an answer, but neither knows her height.

As Zoe enters the living room of the family home in Askins Road, East Bergholt, she stands little higher than the door handle.

A log fire burns in the hearth and cats curl contently on the furniture. Her proud parents have adorned every spare inch of the walls with school photographs of Zoe, her older brothers and sister, and the mantelpiece groans with the weight of their numerous trophies and medals.

Zoe's dozens of medals have been won at the National Dwarf Games for basketball -with lower baskets - shotput, javelin, discus, hockey and more. Today Zoe is looking forward to competing at the 2007 Games in May, at the Alexander Stadium in Birmingham. Her ultimate goal is to be selected for weightlifting at the 2012 Paralympics.

“My favourite subject is PE,” grinned Zoe, her shyness evaporating as she talks of sport, her first love.

“And I love weightlifting and wrestling, especially WWE,” which is the new name for WWF.

Also a keen Ipswich Town fan, Zoe loves supporting her 18-year-old twin brothers, who play in the Ridgeons League. She runs on to the pitch after a match and Helen said: “Often they all walk off holding hands afterwards.”

This down-to-earth Suffolk family doesn't mind the very title of the Dwarf Games, which others many object to.

Helen, 42, said: One of Zoe's friends was saying he saw a 'dwarf' and he stopped himself mid-word because he didn't want to say the word. He was worried what she's think, but she's so laid back it doesn't bother her.”

Ricky, 46, added: “Things can get very politically correct, and the term they use these days is 'people with restricted growth' which is a bit of a mouthful. When we go to Birmingham a lot of people are against the word 'dwarf'. There's always somebody complaining that a comedian has made a joke about dwarfs -and one of them was my favourite Chubby Brown who I think is hilarious - so Zoe just had to laugh too. I think a lot of it depends on how you are brought up. Zoe just gets on with life.”

Helen added: “Which is a lovely way to be really. Her ability to laugh at herself is a great help. Her personality carries her through.”

“She doesn't like people looking at her” said Ricky. “It seems to happen more when we go abroad on holiday, and she or I will always say something if it happens.”

“I don't mind if it's children,” said Zoe, “but not people my own age or older.”

The first Ricky and Helen noticed of Zoe's condition, was when she was eight months old.

Her forehead was growing disproportionately fast, and medical tests revealed achondroplasia, which few doctors they've met since have had any experience of.

There was no history of the condition with the Newson family, and their other children do not have it.

Helen said: “There's not that much information out there from the doctors, as they come across the condition so rarely, if at all. One doctor told us she might grow to just 3ft tall. Most don't really know, and I prefer them to be honest and say so.”

Around the age of 14 or 15, people with dwarfism can have a series of operations to lengthen their arms and legs, and doctors recently offered this to Zoe, but she declined.

“We always said it had to be her decision,” said Helen.

“She doesn't want the operations, which could be very painful, and she's decided she's happy as she is.”

She does endure sinus and ear problems because the bridge of her nose is shaped differently, which keep her off school from time to time.

She also gets incredibly tired, and can take days to recover from an occasional late night.

Helen said: “When Zoe asks for medicine you know she's really in pain. She usually just goes quiet and then you know something is up but it takes a lot for her to admit it. She's not the complaining sort.”

Last month the family gathered round the television to watched Channel4 documentary The Smallest People In The World, about the lives of five American primordial dwarf children. The programme showed their aspirations despite them facing a reduced life span - sufferers of the condition rarely live past 30.

“We did watch it,” said Helen, 42, “and it worried Zoe. When she went to bed that night, she asked me if she was going to die early.

“I said her condition was different to what the American children had. The last doctor we saw, said for her to enjoy life and that's probably the best way. She does that already!”

That's one reason why it's so important and inspiring for Zoe to go to the National Dwarf Games, and see people doing so well.

It's a rare chance for Zoe to meet others with her condition, and also for Ricky and Helen to chat to other parents.

Helen added: “It gives Zoe a huge boost of confidence, even if she does return home shattered!”

Back home in Suffolk, being small brings practical difficulties for Zoe- like the time she had to climb up the chest of drawers to reach the tv.

“The drawers fell over,” said Ricky “and luckily the piece of board which the tv had been sitting on, protected her.”

Helen added: “She once had two lovely black eyes because she fell, and when she puts her hands out they don't protect her head. Now she always flings her head back if she falls.

“Mostly she rolls now,” she laughed. “If she does fall down she gets straight back up.”

Shopping for clothes can also be a trial as Helen searches for the smallest school uniforms with the shortest sleeves, and often gets her sewing machine out to alter clothes.

“Fortunately she likes jeans with raggedy, cut-off hems,” laughed Helen “because I'm not the best seamstress!”

Zoe has size one shoes, so she chooses children's shoes which need to be a wide fit.

In school, she is popular and Helen said: “It helped that her two brothers, at 6ft tall, were at the top of the high school when she joined, so she's never had any problems! At school, she refuses to use her locker because her friends don't use theirs either, preferring to carry heavy bags round all day instead.”

Her friends from primary school are mostly boys, who now tower over her at nearly 6ft and pupils have been known to argue to sit next to her in class.

Helen added: “She's always been a tomboy, and very popular with the boys. Some have been her friends since primary school and now they tower over heart nearly 6ft tall! They all push each other around in a friendly way.”

With Zoe now training in weightlifting, they'd better watch out!

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Do you cope with an unusual health condition? Contact our health reporter Hazel Byford on 01473 324788.

There are many conditions and diseases that can cause short stature. Technically, that means an adult height of 4 feet 10 inches or under, according to the advocacy group Little People of America (LPA).

Some of these conditions involve a primary bone disorder - the bones do not grow and develop normally - called skeletal dysplasia. Over 500 specific skeletal dysplasias have been identified. Of these, Achondroplasia is the most common, affecting about 80pc of all little people.

It is a genetic deformation disorder which leads to abnormal growth of the cartilage.

It affects one in every 25,000 children.

To produce a chodrodysplasitic child with achonr, both parents must be carriers of a recessive gene.

85pc of children with achondroplasia are born to average-size parents.

Source: www.kidshealth.org