EXCLUSIVE: Influencer who re-emerged after four years of silence to say she’s battling an ‘agonising’ disease and cannot leave the house TURNS OFF her GoFundMe with $62,000 raised as doctors tell her symptoms are all in her head
A fundraiser for Instagram star Jessica Stein and her sick young daughter has been put on hold with more than $62,000 of donations in the bank.
Ms Stein, 34 – whose Tuula Vintage travel blog on Instagram and Facebook had three million followers, including Liz Hurley – has shelved her latest GoFundMe appeal just days after it was launched on her behalf by her cousin.
On Monday, Ms Stein’s social media accounts broke years of silence to post a rare update, telling fans of her own battle with a serious illness that matches her daughter – who has been seriously ill since birth with a genetic condition.
Accompanied by a picture of Ms Stein and daughter Rumi, six, both wearing neck braces, the post revealed mother and child were now suffering from ‘multiple complications’ of ‘a connective tissue disorder’.
However, Ms Stein also says doctors have told her it’s all in her head – a condition known as conversion disorder in which anxiety and trauma manifests as real physical pain – and even suggested to her she just ‘wanted to have a sick child in hospital’.
But Ms Stein still believes she is seriously ill and was misdiagnosed with conversion disorder by ‘gaslighting’ doctors. In her GoFundMe plea, she asked for followers to help bankroll treatment estimated to cost $310,000.
Ms Stein’s cousin Sara McGregor, who is listed as the organiser of the fundraiser, wrote on her relative’s behalf: ‘Jess has become incapacitated at home.
‘She cannot lift anything and now doesn’t leave the house outside of medical necessity. She can barely walk or talk before losing her breath and voice, fainting and appearing to be strangled internally.’
A fundraiser for Instagram star Jessica Stein and her sick young daughter has been put on hold with more than $62,000 of donations in the bank. (Ms Stein is pictured outside her home on the NSW Central Coast on Thursday)
A picture of Ms Stein and daughter Rumi, six, wearing neck braces was posted on Monday with a link to the GoFundMe plea to bankroll her treatment for multiple serious medical conditions
Minutes after Daily Mail Australia tried to speak to Ms Stein – who declined to be interviewed – her GoFundMe was put on hold after it had raised more than $62,000
Ms McGregor added: ‘Jess is completely unable to lay down. She is forced to prop herself up on a wall or wedge and pillows.
‘This would make even the strongest of people go insane. She has been unable to work, drive, cook, clean or properly co-parent.
‘She tries pushing herself to breaking point every single day just to be present in Rumi’s life.’
This is not the first time Ms Stein has sought to raise money online to cover medical expenses.
A previous GoFundMe she organised in 2017 raised a total of $235,804 for serious medical conditions that her daughter Rumi was suffering at the time.
On Thursday, Ms Stein was seen wearing a dressing gown as she sat outside her home on the Central Coast, holding her cousin’s baby in her arms.
Minutes after Daily Mail Australia tried to speak to Ms Stein – who declined to be interviewed – her GoFundMe was put on hold after it had raised more than $62,000.
Ms Stein and a woman believed to be her cousin Sara McGregor, who started the latest GoFundMe appeal, were photographed outside her home on Thursday
Daily Mail Australia photographed Ms Stein and the family’s dog in the street outside her three-bedroom detached $720-a-week rental home in a quiet street in Kincumber
WHAT IS CONVERSION DISORDER?
Conversion disorder, also known as functional neurological symptom disorder, is a condition characterised by the presence of physical symptoms without any identifiable medical or organic cause.
Individuals with conversion disorder experience a range of symptoms that may mimic neurological or medical conditions, such as paralysis, blindness, seizures, or speech difficulties.
However, these symptoms cannot be explained by a known medical condition or the physiological effects of a substance.
The underlying cause of conversion disorder is thought to be psychological or emotional distress, often related to a traumatic event or unresolved psychological conflicts. It is believed the symptoms manifest as a way for the individual to cope with or express their distress.
Treatment for conversion disorder typically involves a multidisciplinary approach, including psychotherapy, physical therapy, and supportive interventions. The goal is to address the underlying psychological factors and help the individual manage their symptoms and improve functioning.
The webpage now states: ‘The organiser has disabled new donations to this fundraiser at the moment.’
There is no suggestion Ms Stein or her cousin are attempting to deceive or defraud anyone. Daily Mail Australia accepts Ms Stein’s doctors’ advice that her conditions are caused by conversion disorder, and that her complaints are legitimate in the context of that advice. It is also accepted that Ms McGregor’s observations are legitimate in the context of Ms Stein’s condition.
Daily Mail Australia photographed Ms Stein and her daughter with Ms McGregor in the street outside her three-bedroom detached $720-a-week rental home in a quiet street in Kincumber, on the NSW Central Coast.
Ms Stein shot to online fame with her overseas adventures that took her and now-estranged partner Patrick Cooper, 34, around the world.
She built up a huge following with her beautifully shot photographs from exotic destinations that fuelled the dreams of millions before suddenly vanishing in 2019.
The GoFundMe plea says Ms Stein has spent the last four years being ‘gaslit’ by doctors whenever she tries to get help for multiple serious conditions.
‘Their family shares features of Ehlers Danlos Syndrome, Marfan Syndrome and brittle bone,’ the fundraiser states.
She is said to have suffered an often deadly ‘aortic dissection’ – which can lead to total heart failure within hours – but was denied treatment for it by her neurologist.
This is not the first time Ms Stein has sought to raise money online to cover medical expenses. A previous GoFundMe she organised in 2017 (seen here) raised over $235,000
This is all in stark contrast to how Jessica once travelled around the world blogging under the name Tuula Vintage (pictured in Italy in 2017)
Jessica Stein (pictured with her former partner and Rumi’s father, Patrick Cooper) built up a huge following with her photographs from exotic destinations that fuelled the dreams of millions before suddenly vanishing online in 2019
Ms Stein says she has been repeatedly told she is suffering ‘conversion disorder’ or ‘functional neurological disorder’ – where the brain manifests physical ailments without a medical cause, often in response to an earlier trauma.
The GoFundMe adds: ‘Jess has suffered gaslighting by the health system for many years while trying to advocate for Rumi.
‘She was repeatedly told that the symptoms she was explaining were “physiologically impossible to survive” and that “she wanted to have a sick child in hospital”.
‘Her neurologist misdiagnosed her with conversion disorder, saying that she wasn’t coping with having a sick child.
‘Jess was left alone, and in agony trying to get help in a system built against her.’
The post said Ms Stein ‘now has major vascular congestion symptoms that leave her unable to lay down, with tearing chest pain and spitting up blood.
‘Jess has been bounced in circles between expensive specialists and imaging without anyone managing her care, which she has been largely left to figure out on her own,’ added her cousin.
The problems are said to have begun two years after her daughter’s birth when Ms Stein was living in hospital with Rumi while the infant was treated for her trisomy 2 mosaicism condition.
The rare condition often causes miscarriages, but those who survive can suffer a range of possible birth defects, distinctive facial features, growth and developmental delays, and intellectual disabilities.
Rumi is also said to have too much movement between her spine and skull which compresses her brain stem and the nerves in her spinal column, causing a range of issues.
‘This…impacts her breathing rate and oxygen saturation, heart rate, temperature regulation, inability to safely swallow and gastroparesis [paralysis of the stomach],’ said the GoFundMe post.
‘She currently has periods where she struggles to walk and hold her head up, vacant episodes and pain.’
Doctors allegedly told Ms Stein (pictured with daughter Rumi and their dog) she ‘wanted to have a sick child in hospital’ and blamed anxiety for her illnesses
Little Rumi (pictured) has been suffering from sickness her whole life and the genetic condition is incurable
Jessica and Rumi are ‘unable to lay down without strangulation and fainting,’ her cousin said
It’s understood Rumi was scheduled to go back into hospital for further surgery on Friday.
Her father Patrick, who lives ten minutes from Ms Stein’s home, still maintains daily contact with his daughter and ex-partner, and will be assisting with the hospital visit.
While in hospital with Rumi in 2019, Ms Stein first began to show symptoms including light sensitivity and migraines, which is said to have led to a lumbar puncture procedure where she blacked out.
‘She woke up to severe tearing chest pain, visualised full body circulation changes, leg weakness, numbness and often different blood pressures in each arm,’ said her cousin.
‘Jess has continued to get worse over time, and has become incapacitated at home. She knows that the [aortic dissection] injury could have, and should have killed her.
‘Each time she was sent to hospital with acute and visible symptoms, medical professionals continued to say it was conversion disorder.
‘Jess’s limbs would completely change colour, nails blue and her face would flush and swell when laying down with jugular distension on both sides.
‘She began coughing up blood and pink phlegm multiple times a day, every day.’
But her cousin said: ‘She continued to be told that her scans were clear (as are Rumi’s) and that these physical and acute symptoms were due to anxiety.’
The post said Ms Stein had been silent on social media in recent years ‘for multiple reasons’, including feeling ‘isolated and defeated’.
‘She is so tired of having to fight so hard for them both to receive adequate and appropriate health care and can’t do it anymore,’ the GoFundMe page added.
In a now-deleted post on Ms Stein’s Instagram page, one of her followers noted: ‘It’s actually not common for doctors to gaslight people that have extremely rare illnesses.
‘There is also a very distinct difference between being gaslit by medical professionals [versus] being appropriately challenged on self-reported information if it’s doesn’t align with diagnostic criteria, medical tests and treatments or other medical assessments.’
Ms Stein and Mr Cooper declined to comment when approached by Daily Mail Australia.
List of symptoms Jessica is reported to be suffering
It’s claimed Ms Stein is suffering from vascular congestion symptoms including:
- Bilateral jugular vein distention, also while upright
- Inability to lay down without strangulation and fainting
- Face, tongue, upper body and arm swelling
- Breathlessness and coughing
- Daily haemoptysis (spitting blood) and pink phlegm
- Hoarse, strained or complete loss of voice
- Highly vascularised throat and oesophagus
- Heavy face, neck and chest flushing when laying down
- Crackling, popping noises from upper chest
- Purple tongue with dilated veins underneath
- Intracranial hypertension with wet ears, pulsation in eyes, TIA episodes
- Episodes of semi consciousness
- Blurred vision and nystagmus
- Tachycardia and high blood pressure, often with different pressures in each arm
- Crushing chest and upper abdominal pain
- Severe tearing pain in centre of chest, between shoulder blades and from behind.
Source: GoFundMe
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