Evie-Anne will be 9 on novenber 10th, concidering we was told when she was born that she would not reach her 1st birthday she has an amazing quality of life, and has had many amazing adventures, from concerts to festivals to going on a plane, even getting to disney world in America, things we would never of dreamed she would of been able to do!!

This year, instead of birthday and christmas cards and presents, We are asking all of our friends & family to kindly donate the money they would of spent on a present, or even a pound or two they would of spent on a card & a stamp to our fundraiser to purchase Evie-Anne her very own hydro spa, something that will enhance her quality of life greatly by providing hydro therapy to strenghen her bones & muscles, help reduce daily pain, and of course give pleasure, comfort and fun times in the water, where she loves to be.

Evie-Anne has a very rare genetic chromasome condition called 1p36 deletion syndrome, which leaves her registered blind, fully wheelchair dependant with very low muscle tone, fully gastrostomy tube fed, epileptic, dystonia, scoliosis and many many more medical conditions.

Evie-Anne is in great pain on a daily basis, and has very strong pain relief patches releasing morphine into her body constantly and morphine liquid top ups daily just to be comfortable, most of Evie-Annes pain is from her scoliosis, which means her spine is curved instead of straight, her spine curve is currently at 90%, Evie-Anne wears a corset type spinal brace 23 hours a day, and is currently awaiting spinal corrective surgery as her spinal curve is pushing her organs over, and will eventually cause organ failure if the spine curve is not corrected soon.

Evie-Anne also has great pain from her dystonia, which effects her muscles greatly, dystonia causes the muscles to contract 24/7, (as if they are working out) and this causes the muscles to tear and waste away, also causing her great pain on a daily basis.

Evie-Anne takes over 20 regular daily medications just to function and be pain free, on top of those are top up pain relief, creams, liquids, antibiotics, inhalers, nebulisers & many daily therapy routines.

Few things pleasure Evie-Anne, but her passions are her love for music, sensory rooms & being in warm water. When in these envioroments you will see the pleasure on her face, smiling, giggling, and in the sounds she makes, often when in severe pain and had her max pain relief dose laying in a warm bath is the only relief we can offer, and Evie-Anne is a tall girl, longer than the bath, she needs to be able to have her whole body fully within the warm water for it to be effective.

Evie-Anne does have access to hydro therapy at her special school, however it is only on alternative terms as other children need to access it too, also during school holidays we can not access the service, spas do not allow children to use there facilitys, and public swimming baths are too cold for Evie-Anne to go in, the water has to be bath warm temprature for her muscles to relax.

Thankyou for taking time to read our story, and supporting us, every like & share helps us reach more people, every penny donated will help Evie-Anne so much, and we are so grateful for all the love & support shown to Evie-Anne & our family in the past & the present, every pound donated all adds up, and im sure we can reach our goal in no time, the cost of a card & stamp is only a few pound, i know that doesnt seem a lot to donate but if everyone donated £1-2 each we will hit that target in time for christmas!!!

Evi