Hello, I’m Louise James the SWAN UK Parent Rep for Bristol. SWAN UK (syndromes without a name) is run by the charity Genetic Alliance UK. It offers support and information to families of children with undiagnosed genetic conditions. I have three children. My youngest Scott who was born in 2010 has epilepsy, Global Developmental Delay, severe learning difficulties, hyper-mobility, low truncal tone and sensory processing disorder, but no overriding diagnosis to explain the cause of his issues. It took a long time for doctors to listen to my concerns when Scott was first born as all test results were coming back as normal and this made accessing support nearly impossible, until my health visitor gave me some information which led me to SWAN UK. I have chosen to volunteer for SWAN UK as a Parent Rep so that I can raise awareness in my local and surrounding areas and hopefully help families feel less isolated. My Background is in early years and I work part time in a local nursery as a Special Educational Needs and Disability support.
Parent Rep, Bristol