My daughter Charlotte has a rare chromosome abnormality which means she has part of the long arm in chromosome 4 missing, this affects Charlotte Severely. She is non verbal, she cannot sit independently or walk and is wheelchair dependant, severe global developmental delay, she has spinal rods in her back, is PEG fed and has a supra pubic catheter inserted, has cataracts and the list goes on. During the covid pandemic Charlotte has not been able to swim while at college and her joints are stiffening up and she is in pain despite medication for it. I am trying to get a hot tub to use as a hydrotherapy pool for her and a portable hoist to be able to get her into the tub so we can gently move and ease her joints and muscles. As for many of us covid has been a terrible time for Charlotte and this is resulting in her pulling her hair out which is resulting in her nearly being bald on the left hand side of her head and other self harming behaviours. This would hopefully provide another activity for her support staff and myself to provide Charlotte with, to help support her complex needs long term but especially during this pandemic. Many thanks for reading.
- IAN DARLINGTON
- Eleanor Capewell
- Samantha Greensmith
Oulton, West Midlands, United Kingdom