Our daughter Evie Mae Gray was born on 06.05.17. She weighed 6lb 13oz and appeared the picture of health. Sadly, we quickly noticed that she wasn't developing like other babies her age. After months of appointments, fights with health professionals to listen to us, hospital admissions and tests she was diagnosed with the devastating severe neurological condition Rett Syndrome in December 2018.
Rett syndrome is a rare life limiting non-curable disorder, affecting only 1 in 12000 girls.
Our lives as parents changed we now to to adjust, as a parent we will never accept but we can just educate our self.
All donations and investments will help in the purchase of equipment & clinical trials needed to make Evie’s life that little bit better.
Evie has developed life threatening seizures and will be in pain and discomfort with dystonia (muscle spasms) also it will affect her ability to ever walk, talk, eat and become independent. One of the hardest parts of her syndrome is that she will never be able to say mum, dad or tell us 'I love you'.
Evie has now lost all the early age basic skills she once developed.
Although we can't be certain Evie's prognosis and life expectancy is likely to be very limited. Evie's seizures are likely to worsen, her muscle tone and ability to control her hands will decrease, her risk of scoliosis will increase with age, and she is at risk of severe complications with her heart, bowel and breathing.
Despite all of this our beautiful daughter never stops smiling. She is sociable and loved by every one that meets her. We want to do everything in our power to ensure Evie has the best quality of life.
Unfortunately, despite the amazing support we have from her wonderful team of health and social care professionals there are huge gaps in funding and resources to ensure Evie’s and other Rett families life's are comfortable and the best it can be.
Evie is now on several medications, a body cast and a G peg feeding tube. We are doing all we can to spread the awareness and hopefully make a difference.
My father and my self have run several charity runs and looking to do many more in creating awareness and raise funds.