The family and friends of Emma Berry Goodman were devastated when she became the youngest person in Britain to die of the deadly degenerative condition Motor Neurone Disease.
As the first anniversary of the 17-year-old’s tragic death approaches, a charity event is being organised in her name as they continue to appeal for more money to fund research into finding a cure.
When she was just 13, Emma from Larkhall, Lanarkshire, began experiencing symptoms of the incurable nerve condition that’s more common in those aged 50-plus.
A year later, in the summer of 2005, after suspecting a pulled muscle, she became the youngest person in the UK to be diagnosed with the disease. The condition had already claimed the lives of seven members of her immediate family, including dad Charles.
Known as Chas, Emma’s dad succumbed to the condition in 1995. She was four-years-old, and her sister Sarah, now 14, was just born.
Because sufferers usually survive between two and five years from the onset of MND, Emma’s family knew her time was limited. But when she passed away in her sleep on September 7 last year, it was a massive shock.
Mum Elaine, 45, who also has a 10-year-old son Connor, still finds it too upsetting to talk about her passing.
Stepdad Ross, 39, who treated Emma as his own, said: “We were all aware this was a degenerative disease and that there was no cure.
“We knew what was coming, but her death came out the blue. On the Friday night we’d been at a disco at the children’s hospice Rachel House and she passed away between Saturday night and Sunday morning at home. She hand’t been any more ill than she was normally.”
A talented artist, Emma attended school part-time and was planning her future in fashion or jewellery-making.
One of her best friends Simon Corbett, 18, whom she’d known since nursery school, was like a brother to her.
Ever since she was diagnosed with MND, Simon watched the condition rob Emma, a keen swimmer and gymnast, of her independence.
Simon, an administrator for the NHS, said: “I was abroad on holiday with my family when I found out she had MND.We were all devastated.
“Because Emma’s father had passed away, we hoped he’d be the last one in the family with it, but she started getting all the symptoms.We were in the hotel room crying and just couldn’t believe it.
“Once we came back home, I looked at her and thought ‘how can it happen to you?’ I was speechless, I didn’t know what to say, I just gave her a cuddle. It made a big impact on me. Once she was diagnosed I went down to visit her at least twice a week to provide her with support.
“She couldn’t move her legs or body, only a couple of fingers and would ask her carers to move her. It was so sad to see her like that.”
Despite being confined to a wheelchair and unable to feed herself, Emma lived a full life, thanks to MND Scotland.
The country’s only charity dedicated to helping people with Motor Neurone Disease and their families, supplied her with a £30,000 Eye Gaze computer. Using state-ofthe-art technology, the machine allowed her to type using the gaze of her eyes so she was still able to keep in touch with her pals on Bebo.
And when she needed a break, Emma would visit Rachel House in Kinross, which is a home-from-home run by the Children’s Hospice Association Scotland with round-the-clock care.
Stepdad Ross, a computer consultant, said: “She loved it there. She was nervous at first, but she met different kids with different conditions.
“We all knew what Emma had and what her prognosis was, but she amazed us when she said ‘actually, I am quite lucky because there are people out there with conditions much worse than mine’. It was strange hearing her say that.”
Although the teenager knew what lay ahead of her, she continued to amaze the people around her with her unfaltering bravery and determination.
Pal Simon added: “She fought it and she never gave up. She just carried on life as normal – she didn’t want to sit about, she still went to school, and we even went to Blackpool.
“It was progressing and she couldn’t do much after that, but she still fought it as hard as she could.”
Ross agreed: “She really was determined to live her life and make the most of the time she had.
“Emma also wanted to raise awareness of MND as it’s very much perceived as an older person’s disease, but it does affect younger people.We all hope and pray for a cure, but that won’t happen overnight. It takes time and money to develop these things.”
Knowing her future was limited, Emma began planing her own funeral and tried to cram in as many achievements as she could. The Friends of Emma Appeal, which was launched by Simon’s mum Alison, raised thousands of pounds to help.
One dream was to go on every rollercoaster ride at Disneyland in Florida.
After hearing about Emma’s wish, the boss of XL airline arranged complimentary flights for her and her family to the USA in 2006.
The ambitious teenager also fulfilled her dreams of flying in a helicopter, riding in a stretch limousine and meeting Rangers FC’s first team.
But there was one dream that was out of her reach — a cure – and Emma lost her four-year fight with the disease.
Mourners attended her funeral wearing brightly-coloured clothes – a special request from Emma before she died. The teenager even chose the songs, Chasing Cars by Snow Patrol and the Braveheart soundtrack.
Now, in her memory, life-long pal Simon is staging a charity disco and karaoke evening in Larkhall Leisure Centre on August 28. It falls one week before the first anniversary of Emma’s death.
As well as a quiz, buffet, and raffle, the DJ will be playing a few of Emma’s favourite Clubland tracks while representatives from MNDS Scotland will be raising awareness of the condition.
The disease has often hit the headlines. Back in March 2006, it dominated newspapers when it claimed the life of Celtic legend Jimmy “Jinky” Johnstone. The Lisbon Lions’ death at 61 shocked the country.
More recently, a graphic TV advert portraying the emotional story of MND sufferer Sarah Ezekiel has been banned from broadcast because it is deemed too shocking.
The condition affects more than 120 people in Scotland every year.
Today there are around 450 people who receive help and support from MND Scotland.