Understanding Rare Chromosome and Gene Disorders
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Marion Mitchell

Family Support Officer

I joined the group in May 1995, just after my son Robert was diagnosed (at the age of 1) with two identical markers – resulting in a rare 48 chromosome inverted duplication 15pterq14 (more widely known as isodicentric or idic 15).  In 1996 (pre-internet) I became Information Officer for the group, hand-writing letters to newly joining families; at that time there were fewer than 1000 in our membership. In 1999 I became Administrative Officer and started working with a computer and the internet for the very first time. In June 2003 I became Family Support Officer, my role includes the sending out of new members’ welcome packs. I manage our social networking groups on Facebook. I co-ordinate our local contacts around the world. I also source and write most of the Unique practical family information guides. As area representative for West Sussex, I help to raise the profile of Unique in the Sussex area and beyond. As the mum of a young adult with severe learning difficulties, I am very keen to help other families with information either locally or nationally, as from past experience I know how hard it can be to get information and support.  Prior to my son’s genetic diagnosis, I had no previous knowledge of genetics or chromosome disorders. My background was in retail management. So it has been a steep learning curve (I am still learning). My son is a lovely young man and he has made an incredible difference to my life and to others who know him.