A bedridden woman fundraising for life-changing neck surgery in the USA has been supported in her campaign by British celebs like Olivia Colman, Lee Mack, David Mitchell and Rob Brydon.
Poet and writer Jenny Rowbory, 38, of the Gwynedd area of north Wales, has been extremely ill and bedbound for more than 20 years, after she was diagnosed with severe ME in her first year of university.
Alongside the chronic fatigue condition, she has since been diagnosed with severe Ehlers-Danlos Syndrome (EDS), a genetic disorder affecting connective tissue – which leaves Ms Rowbory unable to hold up or move her neck and head.
Her heartbreaking daily battles have been laid bare by her family who say she is in a ‘relentless intense state of suffering’ and fear she is on ‘death’s door’.Â
The 38-year-old is in such a fragile state that no one has been able to wash her hair since January 2020 or undress her without cutting her clothes off for fear of hurting her. Â
The family are pinning all their hopes for her recovery on surgery by a particular EDS expert in the United States – but they estimate it will cost a whopping £750,000.
Their GoFundMe page, which has been active for more than four years, has raised £278,730 so far, supported by efforts from some of the biggest names in British film and television.
Comedians Lee Mack, Rob Brydon and David Mitchell have made the biggest donation so far, by contributing the proceeds of the first night of their collaborative comedy tour in 2022 – more than £16,000.Â
Actress Olivia Colman spoke at a fundraising event for Ms Rowbory in November 2020, saying: ‘I just wanted to support everybody and say I’m behind you as well.’
But with the young woman still in an extremely precarious position with her health – battling every day and ‘trying so hard to stay alive’, according to her family – the Rowborys still need all the fundraising help they can get.
Poet and writer Jenny Rowbory (pictured), 38, of the Gwynedd area of north Wales, has been extremely ill and bedbound for more than 20 years, after she was diagnosed with severe ME in her first year of university
Actress Olivia Colman spoke at a virtual fundraising event for Ms Rowbory in November 2020 (pictured), saying: ‘I just wanted to support everybody and say I’m behind you as well’
Comedians Lee Mack, Rob Brydon and David Mitchell have made the biggest donation so far, by contributing the proceeds of the first night of their collaborative comedy tour in 2022 – more than £16,000. Pictured: Mack, left, speaking with British comedy writer Paul Kerensa, right, at the separate fundraising event for Ms Rowbory in November 2020
Would I Lie To You? panellist Mack banded together with Gavin & Stacey star Brydon and Peep Show co-creator Mitchell to donate a massive £16,317.17 from the first night of their 2022 Town To Town tour to the Rowborys’ fundraiser – the biggest single sum the family has received to date.Â
And on top of this, Mack gave an amusing interview to British comedy writer Paul Kerensa at the same Evening of Entertainment virtual event as Olivia Colman in November 2020, to fundraise for Ms Rowbory.
He revealed behind-the-scenes tidbits from Would I Lie To You?, backstage photos of Mack and Kerensa writing the first series of beloved sitcom Not Going Out and urged viewers to donate to Ms Rowbory’s fundraiser.
He said: ‘Donate, donate! Don’t just watch passively, donate!’
Olivia Colman also gave a short speech at the event, saying: ‘Hi Jenny, I just wanted to say hi, introduce myself, I’m Olivia, and to give you a virtual hug.’
She added: ‘I just wanted to support everybody and say I’m behind you as well.’
Her pre-recorded message concluded with her saying: ‘Have a great evening and I hope you get loads of funds and I wish you all the best, take care, bye.’
Downton Abbey actor Matthew Goode also spoke at the event, doing a bedtime reading of The Wind In The Willows, a performance of the famous festive poem Twas The Night Before Christmas and personally addressing Ms Rowbory.
Things were not always this way. Passionate about sports and outdoor activities as a teenager, Ms Rowbory (pictured before her illness) was excited to start university in 2004 – but she became ill in her first year
Downton Abbey actor Matthew Goode also spoke at the event (pictured), doing a bedtime reading of The Wind In The Willows, a performance of the famous festive poem Twas The Night Before Christmas and personally addressing Ms Rowbory
She was diagnosed with very severe myalgic encephalomyelitis, or ME, aged just 18. Pictured: Ms Rowbory before her illnessÂ
He said: ‘The incredible Jenny, the brave, the stoic. Quite why some people have to suffer so horrifically in life is beyond any of us, it really is.’
Stars of the Australian soap opera Home And Away, Lynne McGranger and Ada Nicodemou, also sent in a pre-recorded message, encouraging viewers to donate: ‘Life hasn’t been easy for Jenny and her family and we’re sorry to hear that Jenny’s been very ill but we wish you well Jenny and we send lots of love.’
But still, more than four years on from that event, Ms Rowbory remains in enormous pain on a day-to-day basis.Â
It has seen her parents Ann and husband Ian – who are her full-time carers – grow more and more desperate in that time, after a surgery to fix their daughter’s neck instability in January 2020 was not successful.
The caption on the family’s GoFundMe page said: ‘Jenny is at death’s door and is trying so hard to stay alive. It feels impossible that she can survive a few more days or weeks like this, let alone the months it might take to raise the money. She is deteriorating constantly. She is in screaming agony 24/7.’
The 38-year-old cannot support her own head or neck and ‘cannot even move a millimetre anymore’, her family added, without ‘a massive crack’ and ‘accompanying movement’ in her neck.
Required to remain nearly motionless to avoid further damage to her neck, Ms Rowbory’s parents have not been able to have their daughter’s hair cut or washed since January 2020.
They said: ‘It has become matted and greasy with her scalp covered in a layer of gunge.
The 38-year-old (pictured) cannot support her own head or neck and ‘cannot even move a millimetre anymore’, her family added, without ‘a massive crack’ and ‘accompanying movement’ in her neck
Required to remain nearly motionless to avoid further damage to her neck, Ms Rowbory’s parents have not been able to have their daughter’s hair cut or washed since January 2020. Pictured: Ms Rowbory before her illnessÂ
‘It’s awful for her and we wish we could help her but we’re just left helpless. When she was in hospital, they weren’t able to wash it either.
‘It’s hard to be a carer and not be able to meet her basic needs because it would kill her.’
They have not been able to properly change her either: ‘We’ve had to cut her clothes off with scissors in order to change them because when she tries to take clothes off, it causes extreme damage and she had a very close call that meant it wasn’t safe to do it again.’
Even the movement needed to use bedpans and sit up to eat can endanger her now. She cannot do anything for herself and at least one of her parents is always at home with her, the BBC reported.
But things were not always this way. Passionate about sports and outdoor activities as a teenager, Ms Rowbory was excited to start university in 2004 – but she became ill in her first year and was diagnosed with very severe myalgic encephalomyelitis, or ME.
Also known as chronic fatigue syndrome, it left her bedridden, besieged by chest pains, muscle spasms and exhaustion.
Then, in 2015, she was diagnosed with EDS, a genetic condition that causes her body to produce faulty collagen, a key protein needed for connective tissue like ligaments and tendons.
It can cause joints to become too flexible, skin conditions and, in severe and rare cases like Ms Rowbory’s, fragile blood vessels and spinal instability.
Even the movement needed to use bedpans and sit up to eat can endanger her now. She cannot do anything for herself and at least one of her parents is always at home with her. Pictured: Ms Rowbory before her illnessÂ
Actress Olivia Colman gave a short speech at the November 2020 fundraising event (pictured) for Ms Rowbory, saying: ‘Hi Jenny, I just wanted to say hi, introduce myself, I’m Olivia, and to give you a virtual hug’Â
Her pre-recorded message concluded with her saying: ‘Have a great evening and I hope you get loads of funds and I wish you all the best, take care, bye’
It has left her unable to move her head, for worries it would damage it more or restrict vital blood flow to the area.
The fragile nature of her neck reached a crisis point in 2020, when she had an operation to reinforce it – but it did not work.
The Rowbory family has now said they are out of options for suitable treatment in the UK – and that a specialist EDS neurosurgeon in the US is their last chance, as one of the only practitioners in the world to fully understand the condition.
But he told them she would need at least three separate – and, the family reckons, costly – procedures to get better.Â
Alongside this are the costs of a medical air evacuation team to transport the fragile woman to the US, physiotherapy, rehabilitation, additional carers and hospital stays in America’s private healthcare system.
The family have resorted to a multitude of other fundraising methods, alongside the contributions from celebrities, in the four years since opening the GoFundMe page
As she is a poet, Ms Rowbory has wrote and published in September 2021 a collection called We Are The Winter People, with all proceeds feeding into the fundraiser.
And nearly every month, the 38-year-old posts on her blog with a new activity supporters can do to raise money.
Comedian Lee Mack (left) gave an amusing interview to British comedy writer Paul Kerensa (right) at the same Evening of Entertainment virtual event as Olivia Colman (pictured)
Before a bedtime reading at the same event, Downton Abbey actor Matthew Goode personally addressed Ms Rowbory: ‘The incredible Jenny, the brave, the stoic. Quite why some people have to suffer so horrifically in life is beyond any of us, it really is’
One of the latest posts, to mark 20 years since she first became ill, encourages supporters to try the classic American food of a ‘peanut butter and jelly sandwich’, in honour of the fact that Ms Rowbory hopes to get to the US for her surgery.
The family are aware that there is always the risk that the surgery they have pinned their hopes on may not work.
They explained on their GoFundMe page: ‘The neurosurgeon has warned us that there are no guarantees of a successful outcome and that the outcome of good clinical results are less likely than it would be if it were her first surgery.’
But they will not give up, they added: ‘She can’t be left suffering this intensely. She can’t be left like this. Every second is unbearable; she can’t cope. We need to try to fix it.
‘This is the only option left to us. We need a miracle to raise this kind of money.’
Representatives for Lee Mack and Rob Brydon were contacted for comment.
