As regular readers of this blog will know, I am pretty passionate about engaging with representatives of the community in my research. Recently, with colleagues at the Patrick Wild Centre, we won funding to host a ‘family in residence’ at the Centre. This project aims to spend a year in close engagement with a family affected by Fragile X Syndrome. We will invite them to poke around in everything we do – commenting on teaching, research, assessments and strategy for the Centre. The family we have recruited are the McDonalds and to launch the project Craig McDonald has written the following guest post.
I am Craig McDonald, married to Gillian, and we have 17 year old twin boys (Stuart and Matthew) who both have Fragile X Syndrome.
A bit about us first, we live in Peebles in the Scottish Borders, Gillian works for RBS and I work for Lloyds Banking Group. The boys are in 5th year at Peebles High School which will probably be their last year at school before going to Borders College for the next chapter in their lives…..
Stuart and Matthew have a rare genetic condition, called Fragile X Syndrome and were diagnosed at the age of 10. If you saw them, you would probably think they are typical teenage lads, outwardly pretty normal (whatever that is!!) although they do get very excited and agitated in many situations. They have however severe learning difficulties and cannot really read and write. The future for them is very much unknown in terms of their capabilities in adult life – for example around work, relationships, ability to live independently or with support in any way, as well as just life generally in today’s society. As with all teenagers I guess, they know what they want to do – to work, live in flats, have a girlfriend, go to the pub and basically ‘’do stuff’’ that a young adult would do. Gillian and I want them to have the opportunities to realise their potential and achieve their ambitions, balanced with a sense of reality about what may or may not be possible as they grow up.
Since the boys were diagnosed, we are now in touch with the Fragile X Society, the UK wide charity that supports families like ours in providing on-going information, support, advice and guidance. I am also now on the board as a trustee/director hopefully to give back some of my time, experience and leadership skills to the charity that is very close to our hearts.
Through our link with the Fragile X Society we are keen to also help where we can with any latest research that is underway, either to help find medical treatments for Fx Syndrome, or to ensure that there is the right level of information and/or awareness available to people who need to know about Fx Syndrome. For that reason, we are starting out working with Sue at the Patrick Wild Centre in Edinburgh to assist with their ‘’Family in Residence’’ project. The scope of this piece of work is still in a fairly early stage of definition, however it will hopefully provide greater insight and awareness into the experiences of families like ours so that research and teaching around Fx Syndrome can be more closely aligned to what families want.
The project is likely to last about a year, Gillian, me and the boys have started to work with Sue to map out activity that we will undertake on a regular basis. Some of it will be with Gillian and me, some of will be as a family, some of it will be just Stuart and Matthew (good luck there Sue!!!) and some of it will be with the Fragile X Society – and therefore other family members inputs too.
It’s really exciting……..for Stuart and Matthew, its an opportunity for them to be part of Science in real life, not in school where they struggle – and to contribute themselves into how activity or material might be shaped in the future for other people like them and families like us.
This blog is our intro – the project is going to last about a year, so I’d like to think I will provide a regular update on what is happening being the ‘Family in Residence’ with the Patrick Wild Centre, and hopefully helping to shape things going forward which helps other families impacted by Fx Syndrome.
Thanks for reading!