A passionate autism and LGBT advocate from Prestwich is asking for help after a shock diagnosis the day before her 40th birthday.

Mum-of-three Claire Löwen fell down the stairs at her home in November 2022 and initially believed she had broken her coccyx.

Almost a year on, she is in a wheelchair and needs multiple spinal surgeries for severe bone erosion compressed sciatic nerves and complex spinal cysts.

Following her shocking diagnosis, she is asking for help covering costs for accommodation, food, parking, petrol and everything involved before, during and after her surgery in London.

Claire said: “The expenses just keep mounting up.

“I need surgery to improve the quality of my life and to try to repair my bone erosion and stop the severe nerve damage.

“My health has deteriorated so quickly, and it's been life-changing for our whole family.

Bury Times: Claire with friends

“I was someone who loved to hike, go on adventures and on an average day I would do 20,000 steps running around after the kids!”

After falling down the stairs in 2022, doctors carried out a routine CT scan of her tailbone, and during the scan, a technician told her to "take care of herself".

Claire said: “I left thinking what a love, little did I know he had seen something on my CT. 

“I walked back to the waiting room like John Wayne, my back and butt were absolutely killing me.”

She was prescribed strong painkillers, sent home, and told not to do any lifting, bending or twisting and to rest up for the next eight weeks.

Believing she had broken her coccyx she tried to manage the pain until December, the day before her 40th birthday, when she received the report that “turned my life upside down”.

Bury Times: Claire LöwenClaire Löwen (Image: Claire Löwen)

Alongside back pain, she was experiencing skull-splitting headaches that lingered for days and began "violently vomiting" every time she sat up.

She then went back to A&E for another CT scan.

She said: “While I was cleared from a brain bleed they didn’t spot or act on the cerebral spinal fluid leak I was having at the time.

“There was fluid leaking down my spine and pooling into a spinal cyst.

“A cyst doesn’t sound so bad but it's attached to my spine which has lots of nerves, all connected around your body, and they all have different functions.

Bury Times: A normal spine (left) and Claire's spine with a cyst located from her L5 vertebrae to the S4

“Bladder, brain, bowel, even your arms and to your organs: they go everywhere and due to the delicate nature of your spine they can’t just drain or cut it out.”

The cyst is 7.3cm x 4.3cm and because the cyst is being drip-fed cerebral spinal fluid, it has caused severe bone erosion.

She said: “It looks like the cyst is sitting on top, but the bone is completely worn away and because of this, I’m in constant pain.”

Claire has been told to use a wheelchair full time to avoid bumps or falls as the bone erosion is so severe that her spine is too fragile to withstand even a small knock.

She recently had to spend nearly £3,000 on a credit card for a more suitable chair and battery as her self-propelled one moved her spine too much and became too painful to use.

Bury Times: Claire with the charity group

She said: “Until June I was working as a change maker for an autism charity, supporting autistic young people, and working to improve autism acceptance through understanding.

“But I worked past the point of being physically okay.

“I loved my job, all the young people, and everything the charity does but I was in so much pain and the medication was making it harder to work due to the cognitive impact.

“This means we now have financial instability without two incomes and I’m sure a lot of people can relate, to this cost of living crisis.

“I have a credit card bill for a power wheelchair and no wage coming in, but my main worry is the upcoming costs for travel and accommodation in London.”

Bury Times: Claire Löwen

Claire's appointments and care will be received down south as her surgery is at the University College London Hospital, typically a four-hour drive from her home in Prestwich.

As the main caregiver for two of her children with special educational needs, she said it would take a great deal of planning to go to London several times.

As a result, Claire has released a plea for help ahead of the London surgeries.

She said: “We need help with accommodation costs and expenses while we are there.

“These surgeries are essential, and I need to make sure our bills are covered while I recover and that my husband has somewhere close to stay so the kids can visit when I’m in hospital.”

Bury Times: Claire LöwenClaire Löwen (Image: Claire Löwen)

Claire’s son is non-verbal autistic and has ADHD with an attachment so needs to be near her.

For these reasons, she is hoping to rent a property on Airbnb so her husband can work from home and care for the children close enough to visit her in hospital.

She said: “The recovery from the initial surgery can take up to three years due to the nerve damage I have.

“Nerves don’t always repair and there’s no guarantee my surgery will be successful. 

“Ultimately I may be disabled for the rest of my life, but I am learning I can ask for help, so here it is, me asking for help”.

For more information or to donate to a crowdfunding page click here.