Jessica Stein what happened: Health update on Sydney influencer Tuula Vintage after going ‘missing’
An Instagram star who has been ‘missing’ for four years after she quit social media to care for her chronically ill daughter has resurfaced — and now she’s fighting a serious health battle of her own.
Jessica Stein, 40, from Sydney, led a glamorous life and travel blogging under the name Tuula Vintage and had nearly two million followers before giving birth to her daughter Rumi, now six, who has mosaic trisomy 2 – an extremely rare condition.
Now a heartbreaking plea for help has been shared by Jessica’s cousin, who warns her loyal fans that both she and Rumi have serious health issues, can’t lie down and can’t continue with treatment.
The mother and daughter suffer from “multiple complications of a connective tissue disorder they both share” – a genetic condition that causes faulty tissue throughout the body.
The two have also been diagnosed with craniocervical instability, retroflex odontoid and tethered spinal cord, which caused “episodes of paralysis” and an “inability to lie down without strangulation.”
Due to what they claim to be “serious mismanagement” of doctors and neurosurgeons, the condition has only worsened over time.
On Monday, Jessica’s cousin Sara shared the scathing update on Instagram with her 1.9 million fans and also created a GoFundMe page. More than $33,600 has been raised in 16 hours.
An update on the health and well-being of ‘missing’ Sydney influencer Jessica Stein, 40, has been shared
Unfortunately, both Jessica and her six-year-old daughter Rumi suffer from “multiple complications of a connective tissue disorder they both share” – an inherited condition that causes defective connective tissue throughout the body.
Jessica was once known for uploading idyllic photos of herself exploring the world in designer clothes
The image shared on Instagram shows Jessica cradling Rumi on her lap with the couple in neck braces.
This is in stark contrast to Jessica’s past life, which was once filled with idyllic photos of herself exploring the world in designer clothes.
The condition itself is serious; Jessica’s limbs may “change color completely,” her nails turn blue, and her face may “blush and swell.”
But Sara claims doctors kept saying Jessica’s scans were “clear” and that her physical and acute symptoms were “due to anxiety.”
Unable to lie down without strangulation, the two pass out and sometimes have to wear a neck brace
Rumi’s father (pictured) provides constant emergency checks and daily support for both of them
“Jess can’t lie down at all. She is forced to support herself on a wall or wedges and pillows. This would drive even the strongest of people crazy,” Sara wrote.
“She hasn’t been able to work, drive a car, cook, clean, or co-parent properly. She can’t lift anything and now doesn’t go out for medical reasons. She can barely walk or speak before she loses her breath and voice, passes out, and appears to have been strangled internally.
“She tries to push herself every day, just to be present in Rumi’s life.”
“Jess suffered gaslighting from the health system for years as she tried to stand up for Rumi and herself,” the GoFundMe page reads.
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.
Sarah continued on the GoFundMe page: ‘After years of trying and failing to navigate the rigid health care system, they need to turn to the community to help them find the right health care.
“Jess suffered gaslighting from the health system for years as she tried to stand up for Rumi and herself.
She was repeatedly told that the symptoms she explained were “physiologically impossible to survive” and that “she wanted a sick child in the hospital.”
“Their family shares features of Ehlers Danlos syndrome, Marfan syndrome, and brittle bone.”
At the beginning of the traumatic ordeal, Jessica sustained an injury while in the hospital a few years ago and was labeled “hysterical.”
But no CT scan was ordered and instead the neurologist “misdiagnosed her with a conversion disorder” – claiming she “couldn’t handle having a sick child.”
Jess was left alone and in agony tried to get help in a system built against her. She now has severe vascular congestion symptoms rendering her unable to lie down, with tearing chest pains and spitting up blood. She’s too tired to fight,’ Sara continued.
The condition itself is very serious; Jessica’s limbs would ‘completely change color’
Little Rumi (pictured) has been suffering from illness all her life and the genetic condition is incurable
The family remains in turmoil and is now turning to the community for help (Rumi pictured with her father)
This is in stark contrast to what her life was like before the tragic ordeal, with her sharing footage of her travels
Jessica also suffered a rocky pregnancy due to complications from an injury she sustained after being hit by a car as a teenager
While fans are relieved to finally read an update, thousands were devastated by the news.
“I was thinking about you the other day and wondering what happened to Rumi. Reading this breaks my heart,” one fan wrote on Instagram.
“I’m 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 want to donate to the GoFundMe page, Click here.