Instagram star Tuula Vintage starts GoFundMe for sick daughter with rare chromosome condition

It's a family in desperate need of help

Dave Maclean
Tuesday 17 October 2017 20:11
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An Instagrammer with almost three million followers is desperately trying to raise money for their sick daughter – because she and her partner only have $202 between them.

Jessica Stein - best known as blogger Tuula Vintage – has raised around $200,000 (£151,000) since sharing the story of her six-month-old daughter Rumi Willis Cooper.

After a difficult pregnancy, baby Rumi was born weighing just 2kg and diagnosed with a very rare chromosome disorder known as Mosaic Trisomy 2.

Doctors told Jessica that there are less than 10 cases in medical literature, because diagnoses in the womb typically end in miscarriage, termination or stillbirth.

“They are uncertain of how many others currently share this diagnosis, their best guess is two or three in the world. The eldest recorded age that they could trace is aged three,” she wrote on her GoFundMe page.

Mosaic Trisomy 2 means there’s an extra copy of chromosome 2, which can lead to complications in life such as intellectual disability, growth and motor delay, congenital heart defects, fibrosis, deafness, abnormal development of the spine and hernies, and twisting of the intestines.

An intestine-related issue has already arisen; two weeks ago Rumi underwent surgery for intestinal malrotation, which is when a baby’s intestines don’t form into a coil.

Jessica and partner Pat are trying to raise as much money as possible to pay for private healthcare for Rumi, including physiotherapy, speech therapy, and medical equipment.

As part of that effort, the couple – based in Sydney, Australia – were searingly honest about their financial situation.

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

“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.

“Pat and I haven’t been able to work due to caring for Ru around the clock (Pat had finished his Honours Degree just two 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.”

She ended by saying that she hadn’t planned to share pictures of her child on Instagram, but circumstances had changed that position.

“I have always been extremely private and had planned to keep my pregnancy and children offline, until they could make the choice themselves,” she wrote on Instagram. “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.”

Donate to Rumi's GoFund Me page by clicking here.

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