To Hannah – the night before Christmas

Eight years ago this Christmas, when I was six months pregnant with you, my first born child, my sister (your aunty) gave me a blank book. She had had her own first child 7 months earlier, and in the front of the book she wrote that it was a journal for us to record those special early moments, as we [...]

By |2017-05-19T00:30:45+00:00January 2nd, 2015|Uncategorized|1 Comment

For your Eyes only

Mostly, when I write about Hannah (as distinct from Rett Syndrome), I write about her cheeky smile, her wicked giggle, her sparkling eyes and her mischievous personality which captivate most of those who meet her. The regular reader will recognise these phrases and references, the friend will recognise the little girl I describe. But this is not the full story. [...]

By |2017-05-19T00:30:45+00:00January 2nd, 2015|Uncategorized|0 Comments

Improving Symptoms

Rett Syndrome comes with a whole host of difficult symptoms which affect daily life. Alleviating even one of these symptoms can significantly improve the quality of life for the girls and their families. There are several different approaches to this research, none of which I will go into at length here as it's highly scientific and complex, but if you [...]

By |2015-03-02T23:52:32+00:00March 2nd, 2014|About the Research, Improving Symptoms|0 Comments

Bypassing MeCP2

Again, this is rather a complex scientific notion for most of us (well, me!), but in short the idea is to identify other genes which, when mutated, somehow protect an individual from a MeCP2 mutation. There are people who have common MECP2 mutations and normal X chromosome inactivation who do not have Rett Syndrome. Identifying which genes protect some people [...]

By |2015-03-02T23:23:41+00:00March 2nd, 2014|About the Research, Bypassing MeCP2|0 Comments
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