I am running Conwy Half Marathon on Sunday 21st November in North Wales. I started running this year and this will be my 3rd half marathon so far.

Lillana is my second cousin, she has rett syndrome. Rett syndrome is a complex neurological disorder. It mainly affects girls. Although signs of Rett syndrome may not be initially obvious, it's present at birth and becomes more evident during the second year. This often results in loss of skills including speech and movement.

Lili is now 4 yrs old and has very limited movement, she can sit for short periods but normally needs support, and she can reach for her favourite toys and enjoys chucking it when she is felling devilish. She can communicate through simple sounds and certainly laughs and giggles a lot when she is happy. Lili is unable to feed herself and since last year has been fed through a tube in her tummy. She needs constant 24 hour care.

The Retts association is the UK charity that supports people with Retts, their families and carers. Its also plays a vital role in funding the ongoing research into this condition. Recent break throughs in this research have started to lead to a greater understanding of what is the genetic cause and more importantly hopefully finding a cure or easing the severity.

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