An Instagram star who ‘disappeared’ 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, runs a glamorous life travel blog called Tula Vintage and boasted almost 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, warning her loyal fans that both she and Rumi are battling major health issues, unable to lie down and unable to proceed with treatment.
Mother and daughter suffer from ‘multiple complications of a connective tissue disorder they both share’ – a genetic condition that causes defects in tissue throughout the body.
Two were also diagnosed with craniocervical instability, retroflexed odontoid and tethered spinal cord – resulting in ‘episodes of paralysis’ and ‘inability to lie down without choking’.
Due to what doctors and neurosurgeons claim was ‘gross mismanagement’, the condition worsened over time.
Jessica’s cousin Sarah shared the devastating update on Instagram with her 1.9 million fans on Monday and also created a GoFundMe page. Raised over $33,600 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 daughter Rumi, six, ‘share multiple complications of a connective tissue disorder’ – a genetic condition that causes connective tissue to malfunction throughout the body.
Jessica was once known for uploading idyllic photos of herself exploring the world in designer clothes
In the photo shared on Instagram, Jessica is seen holding Rumi in her arms and wearing a neck brace.
This is a stark contrast to Jessica’s past life, which was once filled with beautiful photos of her exploring the world in designer clothes.
The condition itself is serious; Jessica’s limbs can ‘completely change colour’, her nails turn blue and her face can ‘flush and swell’.
But Sarah claims doctors continue to say Jessica’s scans are ‘clear’ and her physical and acute symptoms are ‘due to anxiety’.
Two were suffocated and unable to lie down unconscious and sometimes had to wear neck braces
Rumi’s father (pictured) has been providing constant emergency check-ins and daily support for both of them
‘Jess can’t quite lay down. He is forced to prop himself up on a wall or wedge and pillow. It would drive even the strongest people crazy,’ Sarah wrote.
‘She is unable to work, drive, cook, clean or co-parent properly. He cannot lift anything and now does not leave the house for medical reasons. She can barely walk or speak before losing her breath and voice, faints and appears to be suffocating internally.
‘She tries to push herself to the breaking point every day to be present in Rumi’s life.’
“Jess has been gaslighted by the health system for years while trying to advocate 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 treatment.
Sara continued on the GoFundMe page: ‘After years of trying and failing to navigate the difficult healthcare system, they need to reach out to the community to help them find appropriate healthcare.
‘Jess has been gaslighted by the health system for years while trying to advocate for Rumi and herself.
‘She was repeatedly told that the symptoms she was describing were ‘physically impossible to survive’ and ‘she wanted to take a sick child to hospital.’
‘Their families share features of Ehlers-Danlos syndrome, Marfan syndrome and brittle bones.’
At the start of the shocking ordeal, Jessica had suffered a concussion during a hospital stay a few years earlier and was labeled as ‘hysterical’.
But a CT scan was not ordered and instead the neurologist ‘misdiagnosed her with conversion disorder’ – claiming she was ‘unable to cope with a sick child.’
‘Jess was left alone, and in agony trying to get help in a system built against her. He now has symptoms of major vascular congestion that makes him unable to lie down, with chest pain and spitting up blood. He’s tired of fighting anymore,’ Sarah continued.
The condition itself is extremely serious; Jessica’s Limbs Will ‘Completely Change Color’
Little Rumi (pictured) has suffered from the illness all her life and the genetic condition is incurable
The family remains in turmoil and is now turning to the community for help (pictured with Rumi’s father)
What symptoms did Jess suffer from?
Jess’ current main vascular congestion symptoms are:
Bilateral jugular vein distension, choking and inability to lie upright without fainting Swelling of the face, tongue, upper body, and arms Shortness of breath and cough Daily hemoptysis (blood in the sputum) and pink phlegm Hoarse, strained, or full-mouthed voice and reduction of high-pitched voices. St. Flushing Crackling while lying down, purplish tongue sounds above the chest, intercranial hypertension with dilated veins below, with wet ears, throbbing in the eyes, TIA episodes, episodes of semiconsciousness, blurred vision and nystagmus Tachycardia and high blood pressure, often arm pain and often arm pain Either the pain is in the middle of the chest, between the shoulder blades and from the back.
Jessica also had a rocky pregnancy as she was injured in a car crash as a teenager
While fans were relieved to finally read an update, thousands were devastated by the news.
‘I was thinking about you that day and wondering what happened to Rumi? It breaks my heart to read this,’ one fan wrote on Instagram.
‘Sending so much love to Jess and Rumi, hope they get the medical care and support they deserve,’ commented another.
‘Heartbreaking. All the best to you for activating the village,” wrote a third.
If you would like to donate to the GoFundMe page, click here.
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