An autism and LGBT advocate and mother of two from Manchester is raising money after an accident last year left her unable to work and wheelchair bound.
Being the main caregiver to two autistic children can be a challenge, but when you are in a wheelchair and battling through excruciating pain it can feel almost impossible.
Claire Lowen’s life was derailed in November 2022 when a sudden accident at home saw her world change in the blink of an eye.
The mum-of-two is now trying to raise £10,000 to help pay for all that comes with the care she is receiving in London, and she’s already reached 50% of her target.
She said: “I have been overwhelmed by how kind everyone has been.
“I was such a spontaneous person so it will be great to get back to that.”
The day of the accident started off as hectic and unpredictable as ever, and this particular one had been nothing out of the ordinary. Work calls and emails flooding in, a routine of tending to the family and her job persisted as she collected the laundry from upstairs.
On her way down, Claire slipped and was immediately in searing agony and distress. Her husband and children rushed to her aid after hearing the accident from another room, but no one could have predicted the extent of Claire’s injuries.
In desperate need of urgent medical attention, the mother of two knew that calling an ambulance was not an option, saying: “It was chaos, really bad and the wait times were ridiculous.”
NHS England figures revealed the average wait for an ambulance in a category three situation was skyrocketing during this time, reaching over five hours as one in ten urgent cases waited 11 hours.
Time was of the essence as the pain in Claire’s back was becoming more unbearable and she knew that the wait in Accident and Emergency would be too.
Lowen’s husband drove her to the hospital where she underwent a CT scan and was told she had damaged her coccyx and sent home with painkillers.
But this was far from the truth.
Several days later, Claire was severely unwell with ‘skull-splitting’ headaches and profuse vomiting. Another CT scan was conducted, this time to check for a bleed on the brain which the mother of two was cleared of.
After two CT scans, Claire was still without answers or solutions, until she was dealt the devastating diagnosis of what had been missed.
Claire has a cerebrospinal fluid leak in her lower back.
Often brought on by trauma, the fluid can pool to form a Tarlov cyst which then compresses the sciatic nerves, causing permanent damage. In Claire’s case, the flow of fluid down her spine has caused severe and excruciating bone erosion which is under the constant pressure of the cyst that sits on top of it.
To improve her quality of life and start the healing process, Claire needs complex surgery which aims to partially patch up the bone erosion, remove some of the cyst, and repair as much of the compressed nerves as possible.
Determined not to let it defeat her, she said: “It’s very complicated and I accept that. All I can do is think positive and hope for a positive outcome.”
A Tarlov cyst is extremely rare, and Claire has the rarest type, meaning she is under the care of one of the three specialists in the United Kingdom. The care is exceptional, but it is in London.
Consequently, Lowen and her family are travelling hundreds of miles for every appointment, grappling for accessibility, and desperately trying to figure out how to cope with this as surgery becomes imminent and costs increase.
On top of this, Claire was forced to leave the job she adored. A passionate autism and LGBT advocate, Lowen worked for the autism charity, Spectrum Gaming, providing an online database for autistic young people to meet others like them, make friends and find their voice.
The job was everything to her and leaving it left her devastated, she said: “Unfortunately I’m just in too much pain. That was a very heart breaking and tough call to make.
“The young people are so incredible.”
Claire also worked with Autism Understood, a website built by autistic people. It breaks down the terms often used throughout autism diagnoses and aims to help people learn about themselves and what can help.
This job hit close to home for the charity worker and her family, as it allowed her to make a change in the lives of young people just like her own children.
Claire remains their main caregiver, but being in a wheelchair makes things much more difficult, and the needs of her children have always factored into her journey.
As they make plans for Claire’s recovery, the children must always be near the London hospital, to ensure that they can see their mother is getting better and put their minds at ease.
However, Lowen has been told that she will be in hospital for a minimum of a month while she recovers from her operation. The family plan to stay in an Airbnb in London, which amounts to around £3,500 for one surgery, not considering the cost of travel, food, or petrol – and this is just the beginning.
Lowen was told she must always remain in her wheelchair but finds this impossible due to the lack of accessibility in the family home.
The hunt for an accessible three-bedroom property is ongoing and increasingly difficult, making home life for Claire even harder.
Claire also had to finance her own power wheelchair which cost £2,500, plus an extra £400 for an additional battery, making the most horrific time of her life also the most expensive one, all while paying rent on their current home.
It therefore comes as little surprise that the Lowen’s are reaching out for help. A friend convinced Claire doing this alone could prove impossible and that it was ok to ask others.
A selfless mother, Claire has spent her entire life and career continuously looking after people, so now it is her rightful turn.
Together, they set up a GoFundMe page, allowing people to learn about Lowen’s emotional journey and donate to her and her family at such a difficult time and the outcome has been astounding: “I have shed a lot of happy tears.”
An inspiration to all around her, Claire’s positive and determined attitude in the face of adversity is nothing short of incredible. The fundraising still has a long way to go before the goal is reached, but Claire is looking ahead to a brighter future.
Usually a fun and energetic go-getter, the autism advocate’s ties to her wheelchair mean that day trips require meticulous planning, she said: “I am looking forward to spontaneous days out with the children and just being more me.”
To learn more about Claire’s story and donate, visit: https://www.gofundme.com/f/my-wonderful-friend-claire
Autism Understood: https://autismunderstood.co.uk/
Spectrum Gaming: https://www.spectrumgaming.net/
