I’m running the Great North Run this year in honour of my Niece Harriet, who was diagnosed with Rett Syndrome in 2015.  Although it’ll be quite the challenge for me, it’s nothing compared to the challenges that Harriet faces each and every day.  Despite this, Harriet has the biggest personality, the most infectious smile, and the intelligence to match.  She has so much to offer each and everyone she meets – let’s just say she makes a lasting impression!

For those of you who aren’t familiar with Rett syndrome, it is a rare neurological condition which often strikes previously healthy little girls mainly between their first and second birthday and leaves them with multiple disabilities and medical complexities for life.  Genetic but largely not inherited, Rett syndrome is usually caused by a fault on the MECP2 gene, found on the X chromosome.  Most children with Rett are unable to speak, walk or use their hands, with breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopaedic issues a common feature.  Children 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 in a body that cannot obey signals from their brain.

There is currently no treatment or cure for Rett Syndrome but there is hope. In 1999, scientists identified the genetic mutation that causes Rett and in 2007, they unexpectedly reversed the condition in mice.  Whilst research continues, Rett UK plays a huge role in supporting and empowering people and families affected by Rett Syndrome.  No matter how big or small your donation may be, it will make such a difference.  

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.