Popular blogger and mum Jessica Stein aka Tuula Vintage is going through a really difficult time. Things are so tough, in fact, that she’s reached out and asked for help.
“Out of options”
“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,” Jessica posted in a recent Instagram update about her baby girl’s health crisis.
Born back in April, gorgeous Rumi has been in and out of hospital battling a rare chromosome disorder.
“She is tiny, but she was not born premature,” Jess explained. “Born in to our lives on 28th March 2017 at just 2.03kgs. A full head of brown hair, the spitting image of her daddy but with my own eyes quietly staring back in to me. She is the smallest human I have ever held, and she is the strongest human we will ever know.”
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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
“2 or 3 in the world”
Jess says that Rumi’s condition is super rare, meaning they are navigating the unknown.
“Ru was diagnosed with Mosaic Trisomy 2, with Maternal Uni Parental Disomy 2. They are uncertain of how many others currently share this diagnosis, their best guess is 2-3 in the world.”
Things felt close to reaching a terrible tipping point for this little family yesterday, as Jess shared more of the family’s story and respectfully requested help from her followers and friends.
“With each new day came a new battle”
Jess and partner Pat had exhausted all their savings, commuting from their coastal home to the hospital – and spending time in Sydney, as Rumi undergoes a series of operations and treatments. They are unable to work as advocating for and looking after Rumi is more than a full time job.
They’ve borrowed as much money as they’ve been able to from friends and family. Basically, they really were all out of options, under pressure and in need of urgent help.
“Most days we can barely hold ourselves up let alone each other,” Jess admitted. “We thought that we could just take each day as it comes and focus on the current battle. But with each new day came a new battle.”
They realised what they’d possibly been hoping wasn’t true, that they can’t navigate this difficult time alone.
“Pat and I would like to stress how uncomfortable we are to be asking for financial help,” Jess wrote on the family’s newly established Go Fund Me page. “Ru’s health is invaluable and all of the money in the world couldn’t change her diagnosis and the uncertainty of it, but we would love to be able to afford more specialised care and opportunities for her.”
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Thank you. It has been a mere 24 hours since we shared Ru's journey. We are in complete shock. How amazing that a community can come together to change lives. 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. Thank you. Thank you. Thank you.
“Thank you. Thank you. Thank you.”
The Go Fund Me page aimed to raise $100 000, which would go towards a variety of costs associated with Rumi’s illness (you can see the breakdown of those on the page).
Jess’s request did not fall on deaf ears. In fact it’s gone viral as followers, friends and strangers rallied, raising $197 000 in just 24 hours, to support Rumi and her family. They’ve been overwhelmed by the response, and peoples’ kindness.
“How amazing that a community can come together to change lives. We promise to do our very best to pay this overwhelming generosity forward,” Jess posted last night. “Thank you. Thank you. Thank you.”
“Since sharing a little on Instagram I have been inundated with people from all over the world, expressing their empathy, support and similar situations,” the mum-of-one wrote.
In the midst of caring for Rumi, she and Pat are pondering ways to support and share the stories of others who are going through similarly difficult things.