Spending time with Joy Fergusson is a precious experience. Life seems to have dealt her and husband Nick one of the cruellest blows, with both of their children wheel-chair bound, yet, here is someone so positive, so accepting of ‘her lot’ that you leave feeling enriched and humbled by the positive slant with which Joy manages, so cheerfully, to regard her life.
I have known Joy for many years – our children went to Sunday school together, and I can remember daughter Rachel dancing around with excitement as a little girl when her brother James was born. So it is a familiar reunion when we meet up. But Joy’s life has taken a different route to mine, for both of her children suffer from Ataxia-Telangiectasia, or A-T as it is known.
A-T, is a very rare, neuro-degenerative condition which starts in early childhood causing severe disability and ultimately premature death. It affects many parts of the body, robbing the child of their independence.
“People don’t always know how to react. Three children in a million suffer from AT. We have two in our family. With AT, children are born apparently healthy, but when Rachael was about two some minor signs become apparent – at the time I just thought she was a bit clumsy. It wasn’t until Rachel was in year 5 that a diagnosis was made. Rachel started school at St Mary’s as a normal little girl – by the time she left, she couldn’t walk.”
It was a further blow, when James too, was diagnosed. Joy is very pragmatic -she has never asked ‘why me?’ but instead rejoices in the way her children have coped, “I’m not sure I could have been so positive” she confides. I can’t help thinking that Rachel and James cope because of the example set by their parents, coupled with the support of their friends and the AT society.
“The AT Society has been our lifeline. They hold family days and we get so much support from them. At the moment there is no cure for A-T, so funds are desperately needed to help with research.”
Key with fundraising have been the Hughes and Evans families, both of whom have known Rachel since babyhood and had daughters at primary and secondary school with her. Fundraising started with Lloyd Evans undertaking the 3 peaks challenge in 2008 – and Tim Hughes has organised a ‘troopers4AT’ team in the Bridgnorth walk for several years. Fundraising is also a big part of Joy’s life now, “it’s my way of coping” said Joy.
Both children are at mainstream school in Bridgnorth, where they get about with electric wheelchairs and have physio administered by specially trained teaching assistants. “We’re really fortunate to have such a good support set up” said Joy.
It would be easy to, but somehow I don’t, feel pity for Joy; she is far too upbeat, impressive and positive for pity. What I feel is a huge sense of humility, and I came away with – corny as it sounds – some real Joy in my heart.
Neighbour and friend, Tim Hughes said: “Rachel started school at the same time as our daughter Rebecca and they have been friends ever since. Becky admires her witty sense of humour and the way Rachel always remains strong despite the challenges that she meets on a daily basis. As a result of her efforts Rachel has achieved fantastic GCSE results.
Joy and Nick are true Christians in every sense of the word and we value their friendship highly. The annual Bridgnorth Walk provides us with a fundraising focus for the AT Society which gives help and support for our friends who have been so impacted by this condition.”
The AT Society has a website atsociety.org.uk which provides further details and you can sponsor or donate for the AT Troopers at virginmoneygiving.com/team/troopers4AT
The Troopers for AT are: Oscar Whelan, Deb Waterson, Annette Hughes, Tim Hughes, Rebecca Hughes, Lizzie Hughes, Jill Johnson, Lloyd Evans, Sue Evans, Matthew Evans, Josh Hand. Two additional walkers this year are Jayne Seal and Keith Wildgoose.
