Our twins, Olive and Tilda, were born on 20th April 2010.  They are bright, they are beautiful, and they are the best gifts we could have ever hoped to receive.  

Despite a very difficult birth, and start for Tilda, both girls seemed to be developing perfectly, until just before their first birthday.

Our first clue something might be wrong was when Olive stopped saying ‘Daddy’.  Then Olive lost other skills.  As a parent, you know when something is affecting your child.  And as a parent of twins, a change in one child is made even more painfully obvious.

We contacted the hospital, and after an initial assessment and a subsequent further appointment for blood tests, at 11.15am on Monday 3rd October 2011, six weeks after the very first appointment, Olive was diagnosed with Rett Syndrome.

When looking up Rett Syndrome when we got home, we read ‘imagine the symptoms of autism, cerebral palsy, Parkinson's, epilepsy, and anxiety disorders.......all in one little girl.’

A tiny mutation to a single gene has condemned Olive to a life of profound disability and total dependence.  It is without a doubt one of the cruellest diseases out there.  Crueller still, things will only get worse from here. With breathing difficulties, feeding problems, acute anxiety, epilepsy, severe spinal curvature, all likely prospects.

Amazingly there is hope. In 2007 a paper in the Journal 'Science' described an unprecedented achievement: the reversal of Rett symptoms in a mouse model of the disorder.

Scientists are predicting that Rett Syndrome could become the first curable neurological disorder.   We know the faulty gene.  Scientists firmly believe they know how to restore the gene to health.  There is no brain damage, and so a reversal would give Olive a potentially normal life.

There is one problem - the funds to support the research are entirely reliant on private donations.

We're not comfortable asking for money, but a donation from you could go towards giving Olive and the countless thousands of other little girls a chance of a normal life.

Please give generously.

 Paul & Janie