I look back on memories of Littlelish age 12 months with a heart that swells with pride and love. She started walking 1 week after her first birthday, she could already say many words, feed herself and was a real little character. I observed and admired her every move, her development fascinated me. This is a feeling I expect all mothers can relate to. But imagine one minute listening to your pride and joy saying bye… and then no longer being able to talk? This was Olive’s last word to her family. Olive is a beautiful little 2 year old with a neurological disorder known as Rett Syndrome.


Rett Syndrome is a debilitating disorder which most often strikes previously healthy little girls just after they have learned to walk and say a few words and begins to drag their development backwards.

As the cascade of Rett symptoms descends, girls lose acquired skills, normal movement and speech. Girls are left unable to communicate or use their hands to hold, carry or manipulate objects.

Over time, girls who have learned to walk often lose that ability as well. Loss of motor control sets in, essentially locking these girls into bodies that won’t work, leaving them without the ability to make purposeful movements.

Parents who discover that their daughters have this condition have no real treatment options. They are impotent in the face of this disease, as their little girl begins to fall, as her spine bends, as her body is racked with violent seizures.

Most girls with Rett Syndrome survive into adulthood, becoming increasingly more disabled over time. Invariably, they need one to one, 24 hour a day care for the rest of their lives.

I had never heard of Rett Syndrome, despite the fact it is the most common cause of profound disability in females around the world and 17 girls a day are born with this debilitating condition.

On learning all about this cruel disorder my heart fills with empathy for this family and for Olive. I cannot even begin to imagine how difficult it must be to watch your daughter, the one you watched so intently grow before you eyes now move backwards in terms of development, unable to talk, walk, feed herself or use her hands. But mostly, I cannot begin to imagine being trapped in a body and mind that doesn’t respond to what you want it to do. Rett Syndrome doesn’t affect the brain itself, the girls are not brain damaged, the neurons simply don’t fire and connect as they should. And this means Olive is trapped inside herself, perhaps the most painful thing of all.

Olive’s mother writes a blog over at http://olivesrettjourney.blogspot.co.uk/. It’s an incredibly inspirational read.  The post when Janie is describing just how her daughter tries to communicate with her really affected me the most. It made it all just so real to me, that this beautiful, healthy little girl is trapped desperately trying to communicate. Ugh, it seems so cruel, so frustrating… and yet this family have real hope and so much love and patience. They are fighting for Olive in every single way they can. But their hope it not in vain. Rett Syndrome is potentially the first curable brain disease, it has already been reversed in laboratory mice. The belief is that, treatment is well on the way, whilst successful gene therapy is a bit further away.

Reverse Rett UK is a charity set up to raise awareness and funds to work towards treatments and a cure and has raised over $1million in the last 2 years. Around 95% of all monies raised goes towards developing research into reversing Rett Syndrome.

If, like me you are moved by Olive’s story and you would like to do something to help here’s what you can do:

  • Tweet this post with the hashtag #olivesarmy and #reverserett to help raise awareness
  • Donate on the Reverse Rett website – http://www.reverserett.org.uk/donate
  • Share this post on Facebook or Google+ or simply tell your friends about this dreadful condition and its possible cure.

October is Rett Syndrome Awareness Month so I (along with other East Midland bloggers and hopefully you!) am doing all I can to help Olive and all the other beautiful girls with Rett Syndrome.

Janie talks about how much Olive has taught them and how Olive can teach people “how to recognise & find real love, how to appreciate & nurture it & how to  see many of lives little treasures that so many of us take for granted”.

Please show some love for beautiful Olive and make people aware of Rett Syndrome.

 

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