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23/07/2019

How to be a Rett Syndrome Hero

By Marc Starbuck

Everyone loves a fairy tale.

A brave hero overcomes insurmountable odds, defeats the evil villain and everyone lives happily ever after. What’s not to like?

I have three kids so I’ve read a lot of fairy tales and seen a lot too – over and over and over – but it wasn’t until recently that I realised I was living a fairy tale of my own.

My character in this story is not very interesting. I’m the helpless, desperate father whose daughter is imprisoned and held hostage for years on end. All I really get to do is worry endlessly and – when no one is looking – shed the odd tear.

Let me explain.

When my daughter Amber was born, Sarah and I were overjoyed. We had a perfect little girl to go with our perfect little boy. Life could not be any better. We marvelled as she took her first tentative steps and waited excitedly to hear her speak her first words, but Eighteen months into her life, Amber began to change.

We watched helplessly as day after day her abilities were stripped away. She could no longer walk or use her hands to pick up a toy, or turn the page of her favourite book, and as for first words? Forget it. Our beautiful, little girl was trapped inside her failing body.

Doctors were fetched and harried, heads scratched, brain scanned, bloods drawn and tests taken. After a long, traumatic year the results were in: Amber had Rett Syndrome.

Now the Brothers Grimm knew how to write a fairy tale and if you were unfortunate enough to hear the original text of their famous tales, you’d know that the brothers definitely lived up to their names.

Rapunzel: Removed from her parents by an evil sorceress and cast into the wilderness for years.

Snow White: Taken to the forest to be murdered, then fed a poisoned apple by her evil Stepmother.

Rumplestiltskin: Tricks the Queen to give up her first-born child.

Sleeping Beauty: A wicked fairy predicts the King’s daughter will die when she pricks her finger, and she duly falls into a deep sleep that lasts for years.

And there’s a reason you’ve never heard of ‘The girl without hands.’

In fairy tale parlance, Rett Syndrome is a curse, a poisoned apple, kidnapped child, magic spell and death sentence all rolled into one.

Epilepsy, difficulty swallowing, breath holding, sleep problems, eating problems, scoliosis, can’t walk, can’t talk, can’t use your hands – you get the idea – it is Grimm in every sense of the word.

My little girl has been taken from me and yet I see her every day.

But fear not, without a truly dastardly villain we cannot have the emotional happy ending we all crave. And there is hope!

We know Amber is still in there, she communicates by using her eye gaze computer, she laughs and smiles every day, and is far braver and happier than her helpless, worrying father.

But how to defeat the curse that is Rett Syndrome?

Well, I have asked a lot of doctors and apparently slaying a dragon will not set Amber free, which is a shame because I think I’d look good in armour. But no. The answer lies not in a shiny shield and sword but in the starched white lab coats worn by women and men in laboratories around the world. Scientists, such as Adrian Bird and Stuart Cobb, who are working tirelessly to find treatments and a cure for Rett Syndrome.

Amber is now 9 years old, and in that time, research has dramatically improved to the point where clinical trials for a possible cure will take place this year. It is all so tantalisingly close but our story remains frustratingly unfinished.

You see, like any good tale, we need a hero – actually, we need lots and lots of heroes – to raise money for Reverse Rett, so they can help fund these clinical trials and continue this exciting and vital research.

Heroes who are willing to sit in a bath of baked beans or hop on one leg for twenty-four hours. Heroes who will clear out their attic, garage or toy cupboard and sell their unwanted stuff. Heroes to hold quizzes, BBQ’s and book sales, to run 5K, 10K, mow a lawn or eat as many doughnuts in a minute as they can. Heroes willing to walk a dog, stick up some wallpaper or scale a mountain, and if absolutely necessary, dress up as a Knight while they do it. It’s a lot safer than battling a fire breathing dragon and infinitely better than kissing a frog – although, if you can get sponsorship?

With so many heroes fighting this fight we can write the happy ending this fairy tale deserves. An ending where Rett Syndrome is conquered and Amber – and the thousands of other Rett girls around the world – are finally freed from this wicked curse.

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