Our twin girls, Daisy and Martha, were born just over 3 years ago. Towards the end of their first year, Daisy's development began to lag behind Martha's and by the age of one Daisy was still unable to crawl or stand and she started getting very distressed for no obvious reason.
At the age of two, after a long journey back and forth between services, tests, appointments and sleepless nights, Daisy was diagnosed with a rare neurological condition called Rett Syndrome.
Rett Syndrome often goes undetected in the first year or two of a child's life until skills (such as walking and talking) are lost and a range of complex physical problems (such as epilepsy, feeding difficulties and breathing problems) develop. Daisy is likely to need 24 hour care for the rest of her life.
Rett Syndrome is a cruel disorder. Whilst we love and adore Daisy just as she is, we would do anything to make life easier and more enjoyable for her.
I came across Reverse Rett soon after Daisy's diagnosis - not only have they been a huge support to me personally, they provide hope for the future of girls suffering with this nasty condition. All money raised will go directly towards funding ground breaking scientific research into the condition, with hope for a cure being on the horizon.
A team of our friends and family will be running together on the 15th October to raise as much as we can for Daisy and girls like her.
We are very grateful for any support, no matter how big or small.
With love from us all xxx