Making a difference one stitch at a time

Article Added: 04/01/2010 16:07:31
On January 9th 2010 a unique event will be taking place in Twechar, East Dunbartonshire. Quilters from all over the central belt will be taking part in the first Chromosome 18 Registry and Research Society Europe Sponsored Sew to raise funds for the new charity, and in the process will be making patchwork quilts for Project Linus.  

Kathryn McKerracher, one of the founders of the charity, and a non-quilter, is being sponsored to sew as many half square triangle patches as she can in an hour. Joining her will be many quilters who know her mum Bonnie, a local patchwork and quilting tutor. All of them have been sponsored by their friends, families and colleagues in an effort to raise funds to enable this tiny new charity to realise her dream of holding the first ever conference for families living in the UK and Europe whose children are affected by these rare chromosome disorders.

Kathryn, now 29, was born with 18q-, meaning that a piece of the long arm of her 18th chromosome is missing. Like most affected children, Kathryn struggled to learn to communicate, not only because she had a significant hearing loss but also because she was severely delayed developmentally, though no one knew why at the time. Her vision was impaired along with her hearing, and she had very poor muscle tone which meant that walking any distance was impossible. It was only much later when her family learned more about 18q- that they realised that one of the aspects of the syndrome included autistic tendencies. Challenging behaviours made her mainstream education difficult, but she left Kilsyth Academy with highers in Geography and Biology, and a determination to gain a degree at university. She wanted to become a scientist, though few people believed it was possible. Today she has a Masters in Medical Genetics, and an MRes in Bioinfomatics both achieved from Glasgow University, and was the first person with a Chromosome 18 disorder to have achieved a university education.

‘We need to raise £20,000 to fund the conference we have planned at the end of July 2010. Chromosome 18 disorders are so rare that families whose children are affected may never meet another affected person, and so never realise the potential of the child they are raising,’ says her mum. ‘Kathryn and I have been travelling to the United States for the past nine years to attend the annual family conference there. It’s the one time of year she meets other adults, teenagers and children who live with the same challenges she faces every day. For a few days, she has friends with whom she hangs out, goes for pizza, and laughs with, and we learn more about how we can help her and others like her. It’s been a strain on the family finances, but we’ve managed to get there most years. For many families, such a trip is impossible. That’s why we helped set up Chromosome 18 Europe. Our aim is to enable families from all over Europe to get together to learn more about their child’s conditions, and how to get the treatments and therapies they need in order to realise their full potential.’

Many people have donated fabric which is being cut into 5” squares. Support from shops including Mandors in Glasgow, and from Andrew Heaton of Fabric Freedom means that there is plenty of fabric to go round, and we expect to make several hundred patches on the day of the Sponsored Sew. When each person finishes their hour of sewing patches, those who can stay on will begin sewing the patches in to quilts which will be passed on to Project Linus, and then on to children who are ill, in hospital, or traumatised. So two charities will benefit from what promises to be a day full of chat, fun and laughter…and many cups of tea!

If others would like to take part in the Sponsored Sew, either as a sewer or as a sponsor, please contact Bonnie McKerracher on 01236 823455 for more information.