Rett Syndrome effects 1 in every 12,000 girls, yet these numbers do not reflect the devastation this condition has on children and those that love them
It's important that lesser known issues get as much publicity as the 'biggies', as it could lead to clarity in a situation with an unknown diagnosis. I want to do what little I can to spread a bit of knowledge about October's other dedicated health issue, Rett Syndrome.
It might be that your child has severe epilepsy and disabilities, but no diagnosis. Keep pushing, keep exploring the different options, and rarer conditions like Dravet and CDKL5. But more and more children are being diagnosed with CDKL5 as awareness spreads. We can all do something to share and make others aware of these condtions
My heart is forever broken and it is this pain and the missing that makes me determined to fight hard for the cure for Rett Syndrome. To fight on that no other parent has to feel my loss.
We cannot rely on charities: this needs to be a top priority for our Government and we need to find ways of working together to address this issue. It's no good having policy in place if it is not put into practice. The system needs to be overhauled and fast, if we are to provide the care and support that all disabled children and their families deserve.
Nearly seven years ago my beautiful daughter Olivia lost her battle to the devastating neurological condition Rett Syndrome. In the early hours of November 7, 2008, our world was torn apart. Nothing could have prepared us for the impact and pain we have had to face as a family.
The 14-year-old sister of Coleen Rooney has died after a lifelong battle with a rare genetic disorder, a family spokesman