Hi, my name is Jenny, I am in my early 30s and I live and work in the south west of England. I work part-time in a school and college for young people with visual impairments and other complex needs. When I am not working, I am kept busy by the many different volunteering roles I have for various charities including helping with the youth work at my church. I also love meeting up with friends for lunch or coffee, listening to music and going to live concerts, and reading (mostly autobiographical material but I’m a big Harry Potter and Alex Rider fan too!). When I was little my hobbies included rollerskating, trampolining, swimming and horse riding.
My life sounds fairly typical for someone my age right?! But when you start to add in the fact that I have an extremely rare medical condition, have one kidney and am a Wilms’ tumour survivor; have been visually impaired all my life and totally blind for the last year or so; the fact I have had more than 25 surgeries (mostly on my eyes); my baby teeth didn’t fall out by themselves … you start to get the idea I am sure that my life is far from the norm (whatever that is anyway!) and I am truly unique!
I don’t let the many numerous challenges having WAGR/11p Syndrome throws my way stop me from doing anything I want, and I am very blessed to have had two very special helpers – my two special girlies, Guide Dogs Jaynie (now retired) and Patty who I have had since January 2015.
I hope my story brings parents hope for the future. I am always more than willing to chat to anyone and share my experiences and answer questions.
International WAGR Syndrome Association
PO Box 2875
Montgomery Village, MD 20886