I am raising money for Reverse Rett  to support my friend Helen and her beautiful daughter Lauren.  Helen and I met during antenatal classes about 7 years ago and our children were born 2 weeks apart.  Although initially everything seemed fine during  the following two years I watched as Helen and her family searched for answers as to why Lauren hadn’t reached all the developmental milestones at about the same time as the other children in our group.

When Lauren was 2 she was diagnosed with Rett syndrome, a condition I had never heard of. The Rett Syndrome research trust explains:

 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 puroposeful movements.

There is no cure for Rett Syndrome.

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. For families living with Rett Syndrome, the prognosis has always been poor, until the reversal experiments of 2007 catapulted the disorder into new realms of possibility, positioning Rett Syndrome to become the world's first curable brain disorder.

Since Lauren was diagnosed I have felt helpless to do anything to support Helen and her family.  Helen is a star-she copes so well with everything that has been thrown at her and I now have the chance to do something concrete to help her.

I am doing the Cotswold sprint triathlon to raise money for research into this condition and I would be extremely grateful for any sponsorship.

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