We are raising money to help put towards a new wheelchair xx
Donation protected
** we have changed the goal
amount to £300 to change from the original plan for an electric wheelchair to a manual wheelchair that can fit in anyone's car boot we understand people are struggling at this time themselves with the cost of living crisis if you can donate that would be wonderful thank you ***
Hi my name is Ashley Mogire I live in Loughborough with my Two youngest girls Nancy (12) and Evana (7) and my Husband Evans,
I am disabled due to severe ME/CFS and Fibromyalgia alongside having Kidney Cancer
I have the help of carers at home who help me with everything from personal care to mum duties, their help is invaluable and I don't know what I'd do with out them
Before I got sick
I was a busy social mum of 3 girls always planning the next family outing or birthday party, Halloween Parties and especially planning Xmas, I loved dancing with my husband on night out or taken the kids for a family day out and working 60 hours a week childminding a job I loved
I was always looking to the future planning this or that untill in 2017 all that came to a stop
I had ready been diagnosed with fibromyalgia in 2013 but had kept pushing on I was happy outgoing with a busy social life with my husband then during a pregnancy that was planned and wanted I became very poorly with HG extreme pregnancy sickness which kept me bedbound and constantly vomiting unable to keep anything down, I lost three stone it was the worst experience of my life, I couldn't wait for the pregnancy to be over so I could get back to my old self but unfortunately that wasn't to be
After a year of struggling to manage simple tasks and having crippling fatigue that wouldn't go no matter how much rest or sleep I had headaches, light sensitive noise sensitive, cognitive difficulties and a host of other symptoms I got diagnosed with ME/CFS that was the beginning of four years being bedbound or housebound needing help from carers for my needs for myself but also as a mum I couldn't take my kids to school because I'd wake up in horrendous pain in the mornings and have to wait for the medications to kick in before I was able to move, if I managed a shower we considered that a good day this went on and I'd be upstairs listening to the kids playing in the garden with their daddy or the carer
I'd miss out on parents evenings and sports days school shows
Eventually with small steps and patience I finally managed to claw a bit of a normal life (very limited life compared with my old me) where I was downstairs for the kids coming home eventually to being able to go out for lunch or an appointment
My mobility was worsening and I needed crutches and used mobility scooters for shopping in stores my life was getting a lot better
I still needed a lot of help from my carers eventually I needed a wheelchair for long distances i was loosing strength in my legs and needed support of a wheelchair
becoming a wheelchair user isn't easy it takes time to adjust and at first I was embarrassed and it took courage the first time I went out alone but then I realised very quickly how much I'd been missing out on I hadn't even realised myself how limited my life had become so after that I didn't care anymore I was just grateful to be able to do things again with my girls We went to Kenya at Xmas 2023 to visit my husbands family it was an amazing trip but I spent a lot of time in the bedroom resting feeling wiped out after any activity even conversations were now draining my energy bank, when we got home I went into a crash (where my whole body shuts down and I can sleep in a coma like state for up to 36 hours) dealing with whole body chronic pain and involuntary body movements and anything that needed me to concentrate brought on a flare up of cognitive symptoms the extreme weakness and crushing fatigue kept me bedbound again
We thought it was the travelling and I'd get back on my feet after a couple of weeks of rest and I kept thinking tomorrow will be better but it never was
In September 2024 after nine months of this I notice blood in my urine I thought I had a kidney infection but it turned out to be bilateral Kidney Cancer a tumour on each kidney
So far I have had one operation a partial nephrectomy on my right side the tests came back it's stage 3 Clear Cell Renal Cell Carcinoma which is an aggressive form and high risk of returning so we know I will need further treatment after the next operation on my left kidney which is the 11th June 2025,
I need a wheelchair to be able to leave the house I'm not strong enough to walk long distances anymore
We had a wheelchair from Mobility using my Personal Independence Payment after three years we had to give it back you never own it
I want to have the security of owning my own Wheelchair that can't be taken off me if they stop my PIP
Which they did before and we had to appeal it, we won in the end but it was a very long stressful process
We are not entitled to any help with adaptions in the home or the NHS wheelchair scheme as my husband works and earns over there limits, I deal with a multitude of symptoms and side effects I have also been diagnosed with osteoarthritis in both hips which is very painful, Chronic Pain
This has taken a huge impact on my life it's completely turned my life upside down and has taken its toll on my mental health with anxiety and depression and it's been life changing
I take many many tablets a week and use morphine for pain relief daily, without my husband and amazing girls who have had to do so much without me and my carers who have become family to me I couldn't keep doing this everyday after day but my new wheelchair is to give me independence as a mum and as Ashley and I'm looking forward to getting the next cancer surgery over and whatever treatment they decide to put me on behind me and start the fight to claw a resemblance of a normal life back and my Electric Wheelchair is a huge part of that, we will also put the money towards wheelchair accessories like a drinks holder, a phone holder, a rain cover and wheelchair bag
The money we are hoping to raise is for a second hand electric wheelchair as new ones are thousands and thousands of pounds so please if you can donate, share, fundraise and help me build my life back up again and be the mum wife and person I want to be
thank you so much
Ashley xxx
Organizer
Ashley Mogire
Organizer
England