Just Walk for Reverse Rett 2015

May 9th will see another team of walkers covering between 5k and 60k across the South Downs, in support of Reverse Rett.  Led by stalwart fund-raiser, Greg McKeague, we (yes, I’m doing it too) will be setting out early morning, hiking up and down and round about for several hours, and hoping to make it across the finish line before […]

By |March 26th, 2015|Uncategorized|0 Comments

Rhea Paints for Rett, again!

Last year, 8 year old Rhea was one of many students at Eaton House Manor who joined in their school’s phenomenal fund-raising efforts for Reverse Rett. However, Rhea was so touched by the story of Hannah and girls like her, that she decided to take her efforts one step further, and to use her wonderful artistic skills to do so. […]

By |March 11th, 2015|Events 2015, Uncategorized|0 Comments

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 |January 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. Of […]

By |January 2nd, 2015|Uncategorized|0 Comments

Milestones

I sit across the other side of the room to my husband. We take it in turns to hold out our arms and call her name in high-pitched voices, smiling, trying to entice her to take those few fragile steps in our direction. When she gathers the courage to begin, we speak soft encouraging words, anxious not to distract but […]

By |January 2nd, 2015|Uncategorized|0 Comments