Skyla-Rae ‘s journey

YES !!!!!! Mission complete a massive well done ladies #teamskyla On the 19th of September skylas mum and friend will be walking the three peaks all in aid of giving skyla-Rae some amazing times and the family some memories to treasure . Not long now for the walk which can take upto 12 hours !!! Here’s why there are doing this Skyla-Rae is a little girl who is 5 years old, she as been diagnosed with a life limiting condition sanfilippo syndrome part of her condition is childhood dementia meaning she will forget previously learnt skills i.e swallowing, words , people close to her etc . Children with this condition live between 10-20 years old . Recently skyla as had a major operation she had a feeding tube close to her belly button which skyla as to be fed every 4 hours to get the nutrients that skyla needs. Her mum Stacey my daughter is desperate to take skyla to Disneyland Paris before skyla looses her eyesight and hearing, skylas life now is all about making memories as skyla is deteriorating fast and no one knows how long skyla as left to enjoy watching princesses on tv or dressing up as a princess which she likes to do . So please if anyone can help in any way my family wud b forever greatful and appreciate it massively xx