Emma
1975 - 1991
By Roy Twycross, July 2004, updated November 2009
Editor's note: Roy Twycross, shares his thoughts about his dear friend Emma. Emma had SMA Type II and is the inpsiration for Roy's fundraising for the JTSMA. Many of you will have heard of Roy in his role as organiser of the fantastic Ride in a Ferrari events, which benefited the JTSMA between 2003 and 2009.
 Emma was born in 1975 and died in 1991. The first time I remember her was when we were in infants' class (5-7 years old) at school. She was very much like other children, I thought, in that she was one of the one's that had to use a wheelchair to get around.
However, I was soon to discover that Emma was someone a little different and someone very special. Everyone who met her, instantly fell in love with her, fell for her charm, the sparkle in her eye and the kind personality she always showed to people. Indeed, when visiting Emma's grave with her mother and sister some years after her death I was introduced to a lady who lived near the church and was told that she looked after Emma sometimes when she was very young. Emma's sister, Jude explained to me that this lady was very fond of Emma and was always keen to see her. I said it begged the question "Who didn't immediately fall in love with her upon meeting her?"
I knew Emma for approximately ten years of her fifteen-year life. I count myself lucky to have known her for that long. "It's better to have loved and lost, than never to have loved at all" I think the saying goes. Another close friend, Lee, still joins me at her grave when we go to remember her on her birthday and what I have learnt to call her "Angel" anniversary. In 2003, we also honoured the anniversary of a very special day: when we last saw her at home in the Summer of 1991. On that day, we all gathered in the garden at the farm where she lived with her parents and younger sister, Jude. It was a reasonably warm British Summer day but Emma had to have a rug around her knees for the time we were in the garden. She took us on a brief tour of the areas of the farm and gardens. She had a name for each of the dairy cows that they kept! This is one of my happiest memories from a golden summer when we all left school.
Photographs that sadly I do not have but remember being taken of Emma include one that was displayed on a school notice board with the caption, "Lift flap to see Emma in the bath". Upon lifting the flap, you found a picture of Emma, fully clothed I hasten to add, sat in her wheelchair sitting in the bathtub. Another photo was of Emma leaning on the back of a chair, sitting in her wheelchair. She had an intense look in her eyes like she was concentrating on something far, far away. The picture was captioned "Absorbed".
I do have a small selection of pictures of Emma from various school trips and activities.
I had one copied especially from a class photo of around 10 people to just highlight Emma in the copied photo.
One photo I have often wished I'd got a copy of was Emma dressed in a red and black dress looking for all the world like the British comic book character Dennis the Menace (not that she'd thank me for saying so!) and she was caught on camera looking straight ahead expressing the joy at being given a Christmas present by Father Christmas at a party for school pupils at the local Army base near to where we went to school. Shortly after writing this page the first time around in 2004, I obtained from Barnardo's (who ran the school) a picture of Emma in that red and black dress, in a science lesson, which is a further reminder of her school days. The day I spent with JTSMA members at the Southern Christmas Party in Bournemouth in 2002 also reminded of the above incident.
I have also kept in touch with some of Emma's other great friends from school. Alison, a close friend of Emma from a young age, said to me that had Emma lived on into adulthood she would have invited her to be a bridesmaid at her wedding in 2001. Alison relies on a wheelchair for her mobility but was determined to walk up the aisle with her father and down with her husband the day she got married. There wasn't a dry eye in the house as she entered clad completely in white from head-to-toe including the special callipers she'd had made and with the walking frame decorated in white flowers.
I have spent many happy times since Emma's death with her family having been invited to have lunch with them or just to join them when they go to her grave upon the birthday or “Angel” anniversary. I have always said that if they want us as Emma's friends, to stand back and let the family have time on their own at the graveside, they've only to say so but it’s great to be continually included.
I would like to add an update at this point to say that between 1999 and 2009, I raised nearly £22,000 by organising the event, Ride In A Ferrari on an annual basis, all in memory of Emma. I raised just over £4,000 for the Muscular Dystrophy Campaign charity; just over £3,000 for the Wessex Association for Spina Bifida and Hydrocephalus; just over £3,000 for the orthopaedic section of my local Dorset County Hospital in Dorchester, Dorset; and over £11,500 for the Jennifer Trust for Spinal Muscular Atrophy, just about £1,000 for every year I knew Emma. This is an achievement and an event I am immensely proud of and have great memories of organising.
I will conclude these thoughts by saying that the memory of Emma will live on in her friends and definitely within her family. We always raise a glass (or two!) to her memory when we meet. I have put a lot of effort into trying to do things for other people who have been affected by SMA and set up the event to raise money annually as mentioned above.
I would like to think that Emma would have been proud of this and of all her friends' achievements in their lives. | 
