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  • At home with Daisy, Martha & Nora

    As parents of a young child with Rett Syndrome, we are familiar with feelings

  • Mother’s Day without Jude

    It’s the small things that get me so unexpectedly. Like when I’m about to

  • 5 x 50

    By Beth Johnsson Four young children, the daily demands of a child with Rett

  • Dressing For Dinner

    Recently I experienced first-hand what life is like with a daughter with Rett, day-to-day.

  • I Am His Voice

    By Maja Flak When I became pregnant, I dreamt about reading aloud to my

  • Can you talk the ears off someone about your child with Rett?

    By Helen Simmonds Over the years of being involved with Reverse Rett, my involvement

  • The Spaces In-between

    By Beth Johnsson A couple of weeks ago, at a staff planning meeting in

  • From a Rett Dad on Valentine’s Day

    By Andy Stevenson It only took a few minutes after my daughter was born

  • My life with Lottie

    By Finn My name is Finn and I am 10 years old.  I play

  • Hope

    By Deucalion McGregor-Sims Give me ten minutes of your time and I will tell

  • Ableism

    By Emily Marsden Before Daisy was born I had never heard of the word

  • Fields of Flowers

    We have had a lot of feedback in the last couple of days about

  • Amber, Alexa and Me

    This week’s blog is from Marc Starbuck, dad to Amber. It’s Monday morning, the

  • Reverse Rett Weekly Blog

    We produce a weekly blog to share what we’ve been up to, information from

  • It’s the little things…..(and the big things)

    By Helen Simmonds 2018 was a big year for us in terms of Rett

  • Discover more: Changing the game for people living with Rett Syndrome today

    The 2nd Reverse Rett Discovery Day was held at the Apex Grassmarket Hotel Edinburgh

  • Rett Syndrome Awareness Month-Think global, act local

    By Andy Stevenson Whilst every month is Rett Syndrome Awareness month at Reverse Rett,

  • Gains, Pains and Slow-Moving Trains

    by Marie Bowers So how did I get here? 4th April 2018: I had

  • Reverse Rett Weekly Blog

    We produce a weekly blog to share what we’ve been up to, information from

  • A Life Less Ordinary

    by Louise Wainwright I think back to my early twenties, the days of living

  • Singing for a Cure

    by Colin Gordon A post on Facebook caught my attention recently. It suggested that

  • One Year On

    By Al Wood August marks the first anniversary of Emilia’s diagnosis with Rett Syndrome.

  • Fighting for my disabled child’s right to summer fun

    By Catriona Moore Obeying the law means making summer fun accessible to all I

  • A man called Ray

    By Andy Stevenson I hadn’t played Golf for 6 years until last week, I

  • How to be a Rett Syndrome Hero

    By Marc Starbuck Everyone loves a fairy tale. A brave hero overcomes insurmountable odds,

  • Reverse Rett Weekly Blog

    We produce a weekly blog to share what we’ve been up to, information from

  • Reverse Rett weekly blog

    We produce a weekly blog to share what we’ve been up to, information from

  • From Despair to Hope

    By Stephanie Wood Emilia is our first and only child. When Emilia was born

  • Reverse Rett Weekly Blog

    We produce a weekly blog to share what we’ve been up to, information from

  • Poppy’s Favourite person

    By Victoria Prebble At the point of Poppy’s diagnosis, when she was around 15

  • Reverse Rett Weekly Blog

    We produce a weekly blog to share what we’ve been up to, information from

  • Parallel Lives

    By Claudia Simms Abram. Ten years ago, my sister and I both had our

  • Hope is my Superpower

    By Catherine McKinney Until last year, we followed the same pattern of care for

  • Reverse Rett Weekly Blog

    We produce a weekly blog to share what we’ve been up to, information from

  • Am I bugging people?

    By Andy Stevenson. Last weekend I ran the London Marathon. It’s been twenty years

  • As good as it gets?

    By Emily Marsden At around this time last year our 4-year-old daughter, Daisy was

  • About a Boy

    By Maja Flak I hope this blog post is not going to be too

  • Reverse Rett Weekly Blog

    We produce a weekly blog to share what we’ve been up to, information from

  • Reverse Rett Weekly Blog

    We produce a weekly blog to share what we’ve been up to, information from

  • Reverse Rett Weekly Blog

    We produce a weekly blog to share what we’ve been up to, information from

  • Ten Things

    By Rachael Stevenson I had only just turned twenty when I gave birth to

  • Just as they are

    By Emily Marsden ‘I wouldn’t change her for anything’ Since Daisy was diagnosed with

  • Living like Livvy

    By Luke Bartlett- Express and Star A mother whose daughter died from a rare

  • The Death of Expectations

    By Philip Duncalfe Whether they realise it or not, every new father has expectations

  • What do you say?

    by Gael Gordon t: @GaelGgo2 What do you say to someone whose daughter has

  • Lotta is nine

    By Bianca Simms This text was written in the early hours in the days

  • Amy: Pre-Op

    By Eduardo Reyes @edreyesjourno Nothing changes in our routine. The countdown to our daughter’s

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