Hi, I’m Wendy and I live in South Lanarkshire in Scotland. I’m mum to four children – Caitlin, Sophie, Justin and Charlotte. My younger two children are swans and are believed to have the same undiagnosed genetic condition. Sadly Justin passed away aged ten in 2014. Charlotte cannot walk or weight-bear; she has limited speech, global developmental delay, hypotonia, bowel problems and requires growth hormone. Justin had all of these issues and was also oxygen dependant. Charlotte now attends the same special needs school that Justin did. Despite a barrage of tests over the years we have no diagnosis which can be difficult when dealing with professionals. However, on a visit to the genetics department at Glasgow in 2012 we found a SWAN UK leaflet and I am so happy we joined. SWAN UK has been a lifeline, a friendly ear and has stopped me feeling isolated. Before joining we never fitted in because of the lack of diagnosis, but now I have a support network and friends who just ‘get it’. It is so good to know that I am not alone and always have someone to talk to. I have found that there can be a huge lack of support for undiagnosed families and a lack of understanding from some professionals. I look forward to spreading the word about SWAN UK in Scotland to hopefully help as many families as possible, and to liaise with professionals to foster greater understanding.
Parent Rep, Scotland