An Instagram star who has been ‘missing’ for four years after quitting social media to care for her chronically ill daughter has re-emerged – and now she’s fighting a serious health battle of her own.
Jessica Stein, 40, from Sydney, lived a glamorous life travel blogging under the name of Tuula Vintage and boasted nearly two million followers before giving birth to her daughter Rumi, now six, who has Mosaic Trisomy 2 – an extremely rare disorder.
Now a heartbreaking plea for help has been shared by Jessica’s cousin, alerting her loyal fans that both she and Rumi are battling major health issues, cannot lie down and are unable to proceed forward with treatment.
The mum and daughter are suffering from ‘multiple complications of a connective tissue disorder they both share’ – a genetic condition causing faulty tissue throughout the body.
The two have also been diagnosed with craniocervical instability, retroflexed odontoid and tethered spinal cord – causing ‘episodes of paralysis’ and an ‘inability to lay down without strangulation’.
Due to what they claim is ‘severe mismanagement’ of doctors and neurosurgeons, the condition has only worsened over time.
On Monday Jessica’s cousin Sara shared the devastating update on Instagram with her 1.9million fans and also created a GoFundMe page. More than $33,600 has been raised in 16 hours.
An update about the health and welfare of ‘missing’ Sydney influencer Jessica Stein, 40, has been shared
Unfortunately both Jessica and her daughter Rumi, six, are suffering from ‘multiple complications of a connective tissue disorder they both share’ – a heritable condition causing faulty connective tissue throughout the body
Jessica was once known for uploading idyllic photos of herself exploring the world in designer clothing
The image shared on Instagram shows Jessica cradling Rumi on her lap with the pair in neck braces.
This is a stark contrast to Jessica’s past life, which was once filled with idyllic photos of herself exploring the world in designer clothing.
The condition itself is serious; Jessica’s limbs can ‘completely change colour’, her nails turn blue and her face can ‘flush and swell’.
But Sara claims doctors continued to say Jessica’s scans ‘were clear’ and her physical and acute symptoms were ‘due to anxiety’.
Currently Jessica has become incapacitated at home and is unable to work, drive, cook, clean or co-parent properly.
She can barely walk to talk before losing her breath, is prone to fainting, can’t lift anything and doesn’t leave the house.
Rumi’s dad (pictured) is providing constant emergency check ins and day to day support for both of them
The two are unable to lay down without strangulation and fainting and need to wear neck braces at times
‘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,’ Sara wrote.
‘She has been unable to work, drive, cook, clean or properly co-parent. 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.
‘She tries pushing herself to breaking point every single day just to be present in Rumi’s life.’
‘Jess has suffered gaslighting by the health system for many years while trying to advocate for Rumi and herself,’ the GoFundMe page read
In October 2017 (pictured), Jessica and her partner, Patrick Cooper, launched a campaign page titled ‘Our Little Warrior Rumi’ to raise money for Rumi’s medical treatments
This is all in stark contrast to how her life was before the tragic ordeal (pictured 2017)
Jessica’s family shares features of Ehlers Danlos Syndrome, Marfan Syndrome and Brittle bone
Sara continued on the GoFundMe page: ‘After years of trying and failing to navigate the rigid health care system, they are having to turn to the community to help find them appropriate health care.
‘Jess has suffered gaslighting by the health system for many years while trying to advocate for Rumi and herself.
‘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.’
‘Their family shares features of Ehlers Danlos Syndrome, Marfan Syndrome and Brittle bone.’
At the start of the traumatic ordeal, Jessica suffered from an injury while in hospital a few years ago and was labelled ‘hysteric’.
But a CT scan wasn’t ordered and instead the neurologist ‘misdiagnosed her with conversion disorder’ – claiming 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. She now has major vascular congestion symptoms that leave her unable to lay down, with tearing chest pain and spitting up blood. She’s too tired to fight anymore,’ Sara continued.
The condition itself is highly serious; Jessica’s limbs would ‘completely change colour’
Little Rumi (pictured) has been suffering from sickness her whole life and the genetic condition is incurable
The family remains in turmoil and are now turning to the community for assistance (Rumi pictured with her dad)
Jessica also suffered a rocky pregnancy due to complications from an injury she received after being hit by a car as a teenager
For years she has been silent on social media 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 continued.
While fans are relieved to finally read an update, thousands were devastated by the news.
‘I was thinking of you the other day and was wondering what happened with Rumi. Reading this breaks my heart,’ one fan wrote on Instagram.
‘Sending so much love to Jess and Rumi, hoping they get the medical care and support they deserve,’ another commented.
‘Heartbreaking. Good on you Sara for activating the village,’ a third wrote.
If you’d like to donate to the GoFundMe page, click here.
What symptoms did Jess suffer from?
Jess’s current major vascular congestion symptoms are:
- 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 esophagus
- 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 adnominal pain
- Severe tearing pain in centre of chest, between shoulder blades and from behind.