Alice needs time to relax pain free

Alice is our incredibly brave 10 year old girl. She has never known a day without painful spasms racking her little body. This pain interrupts her sleep and night after night we, her loving family, grieve as we watch her face contort in agony. Standing by frightened to touch her in case we worsen her pain. This situation is made far worse by the fact that it needn't be this way. Alice's physiotherapist and orthopaedic surgeon have both advised that bathing regularly in warm water before bed would help her muscles relax and reduce spasms. Not only would Alice suffer less pain but she would also know peaceful sleep. Her family would no longer suffer the trauma of watching this beautiful little girl writhing in pain. On the occasions Alice had a painful attack access to a bath would help reduce the amount of time it lasted and lessen the severity of the pain. To know that there is a simple solution to end our courageous little princesses suffering but being unable to provide her with it is tearing me and her father up inside. The only bathroom in the house is situated on the ground floor. It had to be converted into a wet room with a shower only to meet Alice's hygiene needs. The room was too small to retain a bath. When Alice is showered at night she has to be taken through the entire length of downstairs, through a hallway and then upstairs to bed. She makes this journey on a stair climber chair. It is impossible to place a blanket over her and she has to sit very upright. By the time she gets to bed she is chilly and tense which adds to her discomfort. Alice's big sister has offered to give up her bedroom, next to Alice's to allow it to be converted into a purpose built bathroom for Alice. Putting an end to the regular and chronic pain Alice suffers for good. Alice is a fighter. She has survived and endured more in her ten years of life than many people will ever experience. At only a few days old Alice had a brain hemorrhage, this was followed by a stroke within weeks of being born. These brain injuries resulted in Alice being diagnosed with Quadriplegic Cerebral Palsy and Epilepsy. She now has a feeding tube in her stomach and is a full time wheelchair user. Alice knows she needs to work hard to try and prevent damage to her body caused by her high muscle tone and be as independent as possible. Alice has had many surgical procedures in her short life, including having both hamstrings lengthened, a gastrostomy, eye surgery and regular botox injections. Alice's body is at great orthopaedic risk and she is likely to need many more surgeries. Having access to warm water to bath in regularly would reduce her pain considerably, giving the medications she already takes a chance to work. Her hard, tight muscles would relax out reducing spasms. Knowing there is a relatively simple way to relieve Alice's pain but being unable to provide it is a guilt no parent should experience. It's nothing compared to the pain Alice feels but it is enough to cause me to reach out and ask for help. We have saved some money ourselves and are holding fundraisers when we are able but this is a big project requiring a large amount of money to complete. £6000 is just the cost of the bath and does not begin to cover the costs of fitting the bath, converting the bathroom, decoration and other specialist equipment to make Alice more independent. Everyday that goes by is another day our brave little girl suffers. Having a warm bath and being transferred straight into bed would be life changing for Alice. If I close my eyes I can see her relaxing in a bubble bath, smiling away at me. I can just imagine her asking for five more minutes when it's time to get out. Her normally rigid body would be warm and floppy as she was lifted into bed and her eyes would glaze over as I kiss her good night. I'd put her to bed safe in the knowledge that should Alice experience a painful attack, I could access the bath and it would relax her enough to help her get back to sleep. Alice is a very loved little girl and this situation is heartbreaking for myself, Alice's Daddy and her five siblings. Alice's daddy works long hours providing for his family but still sits up at night trying to comfort his amazing little girl. No daughter ever had such a devoted daddy. I am reaching out and hoping that with your help we can make Alice's nights of agony can become nothing more than a terrible memory. Thank you for reading Alice's story and please if you are able to help, know that you will be changing Alice's and all of our families lives forever. From, Alice and her distraught Mummy