Laurens Appeal for mobility independence

EDIT 1 ... WE HAVE HAD TO CHANGE AMOUNT , DUE TO MANUFACTURERS SIZES , HOISTS MADE TO MEASURE , ITS SADLY UPPED THE PRICE .. WE APOLOGISE AND HOPE THAT YOU UNDERSTAND X

My story ( told by Lauren )

I was a regular dancer of modern jive, blues and expressive. I felt so alive and free when I danced and it was my therapy. One evening, I noticed during my first dance, that my leg wasn’t doing what it was supposed to do. It just didn’t kick or move much. I was disappointed but went home, thinking it was a one off. The following week the same happened and I soon realised that my right leg was restricted of range. As I was also trying to find an answer to my unexplained lower back problem, I sought help. Unfortunately, by the time I was diagnosed with arthritis in my hip, we went in lockdown and all further appointments were put on hold. My pain got worse and my leg was hurting now too. As lockdown was lifted, I chased my follow up appointment with the orthopaedic consultant and was given an appointment over the phone but the consultant prescribed back exercises and said it would get better with time I didn't accept this telephone diagnosis and complained. I was then given an appointment with the physiotherapist who said there was nothing wrong, so I complained as by now I was bent over and using a walking stick. I was sent for an MRI which came back as negative to any concerns. Tearful, I came off the phone fearing all my options were exhausted. I accepted that nothing is showing as wrong but needed them to accept I was in so much pain and very immobile. I was offered an appointment with the Pain Management Team. This was to be the turning point. The consultant also had the recent MRI image and confirmed he could see arthritis and a slipped disc. I cried. Finally, a reason for the pain. Given a higher dose of meds, I started to manage the pain, but unfortunately the arthritis wasn’t going to be as easy. I was referred to a Hip Trauma Specialist who confirmed that 100% a hip replacement was the only option.

Unfortunately, during all the diagnoses back and forth, I developed a DVT in the same leg. Following further tests, I was diagnosed with a very rare cancer called leiomyosarcoma. By now I’d endured harsh chemotherapy and major surgery to remove the tumour. I had a further diagnosis of leiomyosarcoma in the stump of the IVC which had been removed. I had 28 sessions of radiotherapy, which has reduced the tumour but not before the cancer had chance to spread to my liver and lungs.

This put my chances of the much-needed hip replacement at 0% - my immune system and heart would not cope with the surgery.

Through this whole ordeal I've tried to be happy and positive. I've been told to make the best of life and realised that to do this, I need some independence. At the moment, I need someone to push me in the wheelchair, which I really don't like as it makes me feel less able. I've been looking at mobility scooters on the second-hand market but after some research, have realised that even the lightweight ones are impossible for me to load on and load off from the boot of her car. I've contacted Motability who I lease the car from and they suggested that the next option is to pay for a mobility scooter hoist to be fitted to the car. I must fund the full cost of supply and fit as well as the right mobility scooter for the hoist and I can only get from Motability approved installers. The cost for it all is around £3000.

Much love and thanks,

Lauren xx