INTRO

Welcome. My name is Rebecca and I am mum to Hannah 4 , Molly 2 and Daisy 3 months. Hannah has an incredibly rare genetic condition called Inv Dup Del 8p. There are only 65 registered cases worldwide and she is the only one with her karyotype. She is a truly unique and amazing little girl who lights up every room. No one she meets ever forgets Hannah. I have started this blog for a number of reasons. To improve awareness and understanding of rare conditions without a proper name, to share the highs and lows of our chaotic “real life” and to satiate a lifelong desire to write. I am about to start a course specifically to help improve services for disabled people and look forward to sharing with all of you what our life is like with Hannah, me and Inv Dup Del 8p.

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Author: Rebecca Pender

Rebecca Pender is based in Glasgow, Scotland and one of her many hats she wears is mum to 3 young girls under 6. Her eldest daughter Hannah has an extremely rare genetic condition called Inv Dup Del 8p. She also lives with epilepsy, brain abnormalities and a learning disability. As a family they refuse to let any diagnosis or struggle define what they can or cannot achieve, they may just have to improvise the plans. A graduate of the internationally recognised Partners in Policymaking programme, a leadership programme for parents of disabled children and disabled self advocates, Rebecca is a huge champion of disability rights and is determined to break down barriers for disabled people in areas like inclusion, collaborative care with health providers and social injustice. You can follow her on Facebook and also on Twitter.

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