Story
William is taking on the virtual 5km run 'Change is Possible' in memory of his Auntie Cheryll. Like me, William never got the chance to meet Cheryll, but we have spent a lot of time talking about her and what she might be doing up in heaven.
Rett Syndrome might not be something that a 6 year old can fully grasp, but to be honest, a lot of people have never even heard of it. So to help you out, the following text is taken from the Reverse Rett website to give you a tiny bit more insight:
"rett syndrome is a neurological condition which most often strikes previously healthy little girls between their first and second birthday and leaves them with multiple disabilities and medical complexities for life.
Most people with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common.
Research has shown that girls with Rett do not have brain damage. They know and understand much more than their bodies allow them to show - but they are locked in, trapped by a body that cannot obey signals from their brain.
Whilst there is currently no treatment for Rett Syndrome, there is hope.
In 1999 scientists identified the genetic mutation that causes Rett Syndrome. In 2007, they unexpectedly reversed the condition in mouse models of even late stage disease.
Our research efforts are now focused on translating these research developments into treatments and cures for our children living with Rett Syndrome today."
So, 5km might not be very far for you, but for a 6 year old, it's a real challenge. William would love to be able to raise some money to help Reverse Rett and all the girls with Rett Syndrome, so if you can donate even £1 to help him on his way, you would make him very happy.
Thank you for reading,
Josefine & William x