By Katie, United Kingdom, January 25, 2014
We spend most days praying, fundraising and hoping for a brighter future for our beautiful daughter Georgia.
Georgia is three years old and just four months ago was diagnosed with a devastating neurological disorder called Rett Syndrome.
Georgia was born a healthy little girl and for around the first year of her life developed typically. However it soon became apparent Georgia was losing skills, she could no longer crawl or pull herself to stand, she lost the ability to feed herself and eventually all purposeful hand movements disappeared and most heart breakingly she lost her words leaving her unable to communicate.
We live everyday in fear of the hold Rett Syndrome will take on our precious daughter - when will the seizures start? when will we have no choice but to resort to a feeding tube? will the day come when Georgia is fully wheelchair dependent? When will they pick up curvature of her spine? Will she need an operation? Is that cough going to turn into life threatening pneumonia? Are Georgia's breathing problems going to cause too much of a strain upon her heart? The questions and the heart break are never ending. The symptoms of Rett Syndrome don't 'get better' Rett will over time just take further control of her body. Her body which is no longer able to coordinate with her fully functioning mind.
All of the above causes for endless hours of therapy in the hope that we may maintain Georgia's skills for as long as possible. Georgia generally has around two hospital appointments per week, three hours of various therapies throughout the day aswell as attending a special needs nursery part time for further communication, physical and educational input.
Rett Syndrome effects around 1 in 10,000 girls yet the condition is unheard of by many.
One thing I haven't mentioned however, and by far the most important thing is that Georgia is the most amazing, happy, caring, funny, loving, smiley, brave and inspirational little girl. Georgia has changed our lives and us as individuals for the better, she has this incredible ability to make everybody she meets fall in love with her.