Help Iolo to have the joy of movement

Hi, my name is Iolo. I am 11 years old and I have Downs Syndrome.

Unfortunately, I had a stroke/brain bleed when I was 9 months old which has resulted in me having cerebral palsy as well. This has severely affected my life and my ability to reach some of the milestones that most children and families take for granted. One of them is being able to be mobile.

As a result of cerebral palsy, my hips became partially and completely dislocated.

My family and I have been advised that I cannot, and will not make any progress in my mobility towards any kind of independent movement due to my condition. But, my family believe in me and how hard I can try at things, so they believe I have a chance. That is why we are seeking help to have my right hip reconstructed as well.

Last year I had an operation to reconstruct my left hip, the operation went very well and my range of movement on that side is now very good. However, I am unable to use specialist equipment (like a walker, or Innowalk very well) due to the right hip still being completely dislocated. I am also in quite a bit of pain, have frequent spasms and my parents worry about me developing scoliosis in the future, have concerns about how much physio I can do without being in pain and about my general health and wellbeing.

Unfortunately the NHS will not operate on my right hip, believing it to be "not in my best interests". Thankfully, there is an orthopaedic surgeon who believes that it is in my best interests to be out of pain and able to do the physiotherapy that is so important for my general health, digestion, circulation, muscle and bone health as well as give me the chance to progress with my mobility. He believes that the operation is worth doing for all those reasons, but it needs to be done soon and will also come at a cost.

We have been quoted in the region of £36,000 for the procedure, consultants expertise, hospital stay and nursing care. I am very much hoping that my family can, somehow, gather the funds together for me to have this treatment.

Help to make my life happier, give me the chance to be more mobile and allow me to feel the joy of movement in my own way. It would mean the world to me to be able to stand up (with the support of equipment if necessary) next to my friends and play alongside them, instead of being alone and out of the action in my wheelchair. I am grateful to the NHS for providing some expert care and equipment, including my wheelchair. It is a wonderful wheelchair and gives me the valuable postural support that I need, but I feel that, sometimes, I would be able to access the world around me and have more fun with my friends, if I had the chance to get out of my wheelchair from time to time, be upright and learn from a different view. You can help me to do this. Please donate if you can or, if not, please share this with your friends and family. Thank you so much.