DOCTORS TOLD ME I WAS THE YOUNGEST VICTIM OF MOTOR NEURONE DISEASE AT 13

BRAVE EMMA BATTLES TO RAISE PROFILE OF DEADLY CONDITION
By Lisa Adams

EMMA GOODMAN made medical history as the youngest person in Britain to develop motor neurone disease.

She was just 13 when she first started showing signs of the devastating nerve condition, which killed Celtic legend Jimmy Johnstone.

But with her combination of fierce pride, bravery and determination, Emma has vowed never to give up.

Instead she's crammed remarkable achievements into the precious moments since she was diagnosed.

Now 16, Emma, of Larkhall, Lanarkshire, is today making an appeal for more money to be invested to fund vital research to help find a cure for the disease.

Emma said: "If telling my story can help others then I'm proud to make a difference.


"It sometimes drags me down and I'll cry for a couple of days, but then I get on with things. I'd never go out the door without my hair and make-up done. That's one thing I've got going for me."


In fact Emma is already picking out an outfit for a trip to watch her idols Snow Patrol at T in the Park next weekend. It's just the latest adventure in her action plan to make the most of every moment.


Going on every roller coaster at Disneyland in Florida, a shopping trip in London, a ride in a helicopter and a spin in a limo, are just some of the fun-filled memories which help Emma to get up every morning.


They're all part of her campaign to be as ordinary a teenager as possible. That's atough challenge when Emma, who is losing muscle control, now relies on mum Elaine, 43, and stepdad Ross, 36, to do things like helping her to dress and even feeding her.


"I want to be independent but my body doesn't let me," said Emma.


But things haven't always been that way. Emma started dancing when she was just three and won an impressive collections of medals. She also loved netball and gymnastics.


With a gang of close friends at school and sister Sarah, 12, and brother Connor, eight, to keep her company at home, life was good.


So when Emma first got pains in her left leg she thought she'd strained a muscle. But within months she was limping and then tripping over.


Eventually she struggled to stand up at all and went through a series of hospital tests. When Emma bravely mentioned that her dad, Charles Berry, had been diagnosed with motor neurone disease in his late 20s, doctors initially felt Emma was still too young to be showing signs of the illness.


Emma's mum Elaine said: "Emma was four when her dad died from motor neurone disease. I was pregnant with Sarah at the time and her birth was brought forward so her dad could live long enough to hold her. He died five days after Sarah was born."


Soon Emma was relying on crutches to get around, then a metal frame and eventually a wheelchair.


Emma recalls vividly the August evening last year when a consultant arrived at her door with bad news. She'd just returned from a holiday in France andwas feeling upbeat. But a DNA test revealed that Emma had a genetic fault in her chromosome 21.


Emma said: "The doctor told me I was unique. He said there was no one else in Scotland so young who had this, but the disease was hitting people younger and younger.


"When he told me, I managed to keep it together. It had always been in the back of my mind that this was what it could be.


"We had all been scared to say it. I didn't want to even mention it.


"I was really upset that night. I used to keep a diary and I still smile when I read about some of the things I used to get up to with my friends.


"Until I was diagnosed my upper body was still okay. I'd even been able to play tennis in a wheelchair in France. But after I was diagnosed, I lost movement in my arms."


THE death of Jimmy Johnstone from motor neurone disease last year stunned the country.


But at 61, the Hoops star was within the age range which is average for most patients.


Dr Ammar Al-Chalabi, neurology expert at King's College, London, a world centre for research into motor neurone disease, says Emma is exceptional.


He said: "At 13 Emma was certainly one of the youngest in the world to have developed the disease. It is rare below the age of 30."


The disease is caused by a breakdown in the body's nervous system, which affects movement and may remove the sufferer's ability to speak or eat.


Experts believe it is related to an excess ofglutamate, a nerve transmitter made from amino acid, which can damage motor neurones.


Emma is taking Riluzole, the only drug which research has revealed may slow down the process of the nerve cells dying.


There is also hope that stem cell research may eventually lead to a cure.


An unforgettable surprise 16th birthday party with all her friends helped Emma through the heart-breaking first few months after being diagnosed.


"I thought I was just going out for dinner with my family," recalls Emma. "Then I went into a room with 120 friends. I was shocked. People gave me presents but I couldn't hold them properly or shake their hands.


"It was a great night though. There were fireworks in the letters of my name which lit up the sky. We even had astripper."


The school prom just a few weeks ago was also a show-stopping success. In a red strapless dress, complete with sparkling diamante across the skirt, Emma sipped champagne.


She said: "I had champagne and strawberries before I left for the prom. It was a great evening but when everybody got up to dance, I wanted to be up on that dance floor with my friends. I didn't like that I had to sit at the side and watch."


Emma also continues to make plans for the future. She's just sat standard grade exams, loves photography and plans to study Higher art and higher English at school next term.


Emma said: "I always wanted to be a fashion designer. I love jewellery making too. But I love art. I find it really calming. I can always sleep after I do art."


And behind her, Emma has support from her family, including her stepdad Ross, who has treated her like a daughter for almost as long as she can remember.


There's an old photograph of Emma in the arms of her biological dad, Charles. It was taken just months before he was diagnosed with the deadly disease.


Now that terrible legacy has been passed on to his daughter but a big difference gives reason for hope.


Choking back tears, mum Elaine said: "I am just so proud of Emma. After Emma's dad was diagnosed part of him gave up. But Emma has never done that. She's got a fantastic spirit.


"She could easily have given up, but she hasn't. She's amazing."


Today there are 280 people across Scotland who suffer from motor neurone disease and 120 new cases are diagnosed every year.


The Motor Neurone Disease Association provides care specialists, home visits, advice and information line.


It also offers support to families and welfare grants are available for those in need, while volunteers do everything from befriending patients to organising fundraising events.


For support or to make a donation contact the Scottish Motor Neurone Disease Association on 0141 945 1077 or email info@scotmnd.co.uk
http://www.dailyrecord.co.uk/news/ne...name_page.html

This story popped up in my Twitter search.

Always brings a tear to my eye.

BobbyB posted this thread in June of 07. How is your Emma doing?

She appears to have died Sept 7, 2008.

http://www.rossgoodman.com/category/family/emma/

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