Emily Rose passed away on Thursday 21st March 2019 in Naomi House snuggled between her mummy and daddy. In her 3 short years she won many hearts as she battled against her cruel condition. Her last few weeks and months were very hard for her. Through this time she was surrounded with so much love and support, not only from her family but from everyone who knew her.
Now we have the impossible task of arranging her final journey and resting place. We have had many offers of help from friends, so have restarted Emilys Go Fund Me page for any contributions to Emily's farewell.
Thank you so much for reading and supporting our daughter Emily Rose.
Our beautiful daughter Emily Rose Elizabeth was born on 01.11.15. She weighed 7lb2oz and appeared the picture of health. Sadly, we quickly noticed that she wasn't behaving 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 severe neurological condition Rett Syndrome in April 2017.
Rett syndrome is a rare life limiting disorder, affecting only 1 in 12000 girls. Rett Syndrome is not usually hereditary but we also lost our son's twin brother to an undiagnosed genetic disorder that may have been Rett.
Rett Syndrome can affect children differently, but for Emily it meant she was never able to sit, walk, talk or eat. She was fed by a PEG tube in her tummy ad her swallow was so unsafe. Emily also developed life threatening seizures and was often in pain and discomfort with dystonia (muscle spasms). One of the hardest parts of her syndrome was that she was never able to say mum, dad or tell us 'I love you'.