Tuula Vintage's Jessica Stein Opens Up About Her Baby’s Rare Genetic Disorder

This Aussie Blogger’s Campaign To Raise Awareness About Her Baby’s Rare Genetic Disorder Has Gone Viral

You might recognise Jessica Stein from her incredible travel snaps on Instagram or her regular appearance at fashion shows around the world. But the Aussie woman behind the hugely popular Tuula Vintage blog has opened up about the heartbreaking challenges she’s faced offline in the past year.

After a closely monitored pregnancy – in which Jessica was on bed rest from 24 weeks – and a complicated birth, she and partner Pat welcomed their first child in March, a daughter named Rumi. Rumi was diagnosed with an incredibly rare genetic disorder – Mosaic Trisomy 2, with Maternal Uni Parental Disomy 2 – and the young family have been in and out of hospital ever since.

“Our Genetic specialists at Sydney Children’s Hospital have told us that there are less than 10 cases in literature,” Jessica wrote on the GoFundMe page they set up on Monday.

“There have been thousands of prenatal cases that all end in miscarriage, termination or stillbirth. They are uncertain of how many others currently share this diagnosis, their best guess is 2-3 in the world. The eldest recorded age that they could trace is aged 3.”

“There is no prognosis or statistics available as there simply isn’t any.”

What would you do if your daughter was born with one of the rarest voices of all, and you had an international audience that could be open to listening? There are a whole world of people out there who live in similar, and much worse situations to ours without anyone to hear them. I have always been extremely private and had planned to keep my pregnancy and children offline, until they could make the choice themselves. But sometimes you make plans and life happens. We have struggled to decide if we should keep Ru and all her strengths and her battles to ourselves, or to share. To find anyone to relate. Maybe if we could help educate even just one person there would be more understanding... I started my blog as an outlet of personal distraction, hope and simply starting my life over after being hit by a car. Maybe all of this travelling and experiences with life were just building me up for something so much more. Maybe it's not my voice that's meant to be heard, but hers... Pat and I have started a @gofundme page to try and help us help our Ru. We have been trying our best to avoid asking for help throughout this tough twelve months, but there comes a point where we are running out of options. If you would like to contribute, or share we would be thankful beyond measure. Or if you'd just like to learn a tiny insight to our Ru and her incredible accomplishments and complexities please read here http://gofundme.com/our-little-warrior-rumi or through the link in my bio. 🌻 xx

The pair have stressed how uncomfortable they are with asking for financial help, but admitted their savings are long gone and they only have $202 left between them after borrowing from family.

“Pat and I haven’t been able to work due to caring for Ru around the clock (Pat had finished his Honours Degree just 2 days earlier). We have lived off what little savings we had, prioritising paying the rent for a house we barely get to live in and frozen meals each day while we split shifts in Hospital. Pat tried to work casual hours with a friend doing labouring, but never finished a day without a call from me in the Emergency room or in the back of an Ambulance.”

Fortunately, thousands have come to their aid donating $198,457 in just over 24 hours.

Home. 🌱

Jessica took to Instagram to share their gratitude.

“We are in complete shock. How amazing that a community can come together to change lives," she wrote. "We promise to do our very best to pay this overwhelming generosity forward.”

“The heavy knot that has been in the pit of my stomach for months on end is now lodged in my throat; I am lost for words that will ever carry the weight of what this means to us.”

She has said that after covering Rumi's health insurance, treatment and medical and physical equipment, any additional funds would go towards the charities that have supported them.