An Instagram model who has been ‘missing’ for four years after quitting social media to care for her chronically ill daughter has re-emerged to claim that 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 that can lead to serious medical problems and heart defects.
Her cousin, Sara, has issued a plea for help, telling Jessica’s loyal fans that she and Rumi are ‘battling major health issues… and are unable to proceed forward with treatment’.
She said the pair are suffering from ‘multiple complications of a connective tissue disorder they both share’ – a genetic condition causing faulty tissue throughout the body.
Sara said 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, Sara shared the update on Instagram with Jessica’s 1.9million fans and also created a GoFundMe page that has raised more than $33,500 in 16 hours.
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.
Sara said Jessica’s limbs can ‘completely change colour’, her nails turn blue and her face can ‘flush and swell’.
But she claims doctors continued to say Jessica’s scans ‘were clear’ and her physical and acute symptoms were ‘due to anxiety’.
Jessica is now incapacitated at home and is unable to work, drive, cook, clean or co-parent properly, the GoFundMe said.
‘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.
Sara continued on the GoFundMe: ‘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 Sara said 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.
