Hi! I’m Susan and live in Duffield with my husband Chris and children Theo and Tara. I am a trustee of Special Friends, hold the Secretary role and volunteer at playgroup and other events. In particular once a month I lead our parents' coffee mornings.
My daughter Tara has WAGR Syndrome and has faced many medical conditions, operations and procedures. She is severely visually impaired, has a moderate hearing impairment, has severe learning difficulties, challenging behaviour and has a speech & language disorder. However, she is so much more than her medical issues and impairments; she is a happy, determined little girl with a massive personality who makes the most of life.
When Tara was diagnosed as a baby, I felt completely dumbfounded. I didn’t know where to turn. It was a whole new world full of new terminology, appointments, form-filling, anxiety and uncertainty. I wasn’t sure I could cope and no-one I knew was part of that new world. There were very few special needs play and support groups out there at that time but thankfully I found a couple which I had to travel at least 30 minutes to get to. I am so glad that Lucy asked me to be part of Special Friends and that it is local and available for parents and carers who find themselves struggling like I was. I have made many wonderful, local friends who can really understand the challenges of having a complex child like mine and help me to look on the bright side of life and have fun.
Special Friends has given me a wonderful opportunity to help and be supported by other families with complex children and to use the skills gained in my earlier career to help build Special Friends into an even more supportive, efficient and professional charity.