Aussie mum raises $200k for newborn with rare disease

She’s known for her popular lifestyle website Tuula Vintage, but before her daughter Rumi was born, Aussie blogger Jessica Stein admits she was determined to keep her child offline and away from the spotlight of social media.

However following Rumi’s birth in March and her devastating diagnosis with a genetic disorder so rare it’s believed there’s only three cases in the world, Jessica knew she had to go public and raise awareness about her daughter’s condition.

The mum, from NSW’s Central Coast, shared Rumi’s heartbreaking plight earlier this week, revealing her entire story on a GoFundMe page.

“Our daughter’s name is Rumi Willis Cooper. She was born in to our lives on 28th March 2017 at just 2.03kgs,” wrote Jessica.

“She is the smallest human I have ever held, and she is the strongest human we will ever know.”

After a complicated pregnancy that saw her admitted to hospital on bed rest, Jessica and her partner Pat were given the heartbreaking news their newborn Rumi had been diagnosed with “Mosaic Trisomy 2, with “Maternal Uni Parental Disomy 2” making her “one of the rarest girls in the world”.

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“Our Genetic specialists at Sydney Children’s Hospital have told us that there are less than 10 cases in literature,” explained Jessica.

“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.”

Now splitting their time between their Central Coast home and Sydney’s Children’s Hospital and with an army of paediatricians, genetics, gastro, renal and immunology experts taking care of Rumi, the couple have reluctantly reached out for financial aid after their bank balance hit $202.

“Pat and I would like to stress how uncomfortable we are to be asking for financial help and want to be completely transparent,” Jessica explained.

“Unfortunately, all of our savings are long gone. We have already borrowed a few thousand from family to tide us over, but rent is due yet again and we currently have $202 between us."

The couple’s plight has clearly struck a chord with the public, with an incredible $200,000 raised in just one day, completely surpassing their goal of $100,000.

“It has been a mere 24 hours since we shared Ru's journey,” Jessica wrote in a follow up Instagram post.

“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.”

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