Lifestyle blogger Jessica Stein is by her own admission an extremely private person.
But earlier this year her usual posts of enviable outfits and incredible landscapes changed to gorgeous family pictures featuring newborn daughter Rumi Willis Cooper.
The very first picture Ms Stein posted of the tiny tot showed her little one with a feeding tube attached, causing many of the Central Coast-based mother’s 2.7 million followers to ask if Rumi was okay.
The very first picture Ms Stein posted of the tiny tot showed her little one with a feeding tube attached, causing many of the Central Coast-based mother’s 2.7 million followers to ask if Rumi (pictured) was okay
Ms Stein has chosen to lay bare the details of Rumi’s incurable genetic condition in hopes of raising money for her ongoing and very expensive treatment
But she wasn’t. And Ms Stein has chosen to lay bare the details of Rumi’s incurable genetic condition in hopes of raising money for her ongoing and very expensive treatment.
In a post that has now been seen by over 30,000 people, the mum-of-one explained that her child has Mosaic Trisomy 2, with Maternal Uni Parental Disomy 2.
It is a chromosomal disorder characterised by having an extra copy of chromosome 2 in a proportion of bodily cells.
‘Our genetic specialists have told us that there are less than ten cases in literature,’ Ms Stein said.
‘Our genetic specialists have told us that there are less than ten cases in literature,’ Ms Stein (pictured) said
With a target of $60,000 Ms Stein wants to put money towards a specialised paediatrician, occupational therapy, physiotherapy, and speech therapy – and has started a GoFundMe page to assist in that quest
‘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 two or three in the world. The eldest recorded age that they could trace is aged 3.’
With a target of $60,000 Ms Stein wants to put money towards a specialised paediatrician, occupational therapy, physiotherapy, and speech therapy – and has started a GoFundMe page to assist in that quest.
The decision to reach out for help, she explained, was one of the toughest she’s ever had to make.
The decision to reach out for help, she explained, was one of the toughest she’s ever had to make
Ms Stein and her partner Patrick are taking it in turns being by Rumi’s bedside at Sydney’s Children Hospital, which is more than two hours away from their home on the NSW Central Coast
‘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,’ she wrote on the page.
‘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.’
Ms Stein and her partner Patrick are taking it in turns being by Rumi’s bedside at Sydney’s Children Hospital, which is more than two hours away from their home on the NSW Central Coast.
Neither of them have been able to work because days would end ‘with a call from me in the emergency room or in the back of an ambulance.’
Neither of them have been able to work because days would end ‘with a call from me in the emergency room or in the back of an ambulance’ (pictured is Ms Stein and her partner Pat with baby Rumi)
‘We have absolutely no idea what ‘goal’ to aim for as we don’t know the level of care Ru will need over the years but absolutely anything would make a difference,’ she said
While the oldest known survivor of the illness is only three years old, meaning the prognosis and long-term health of their daughter can’t be known, Ms Stein understands that easing their financial stresses could afford their daughter more time.
‘We have absolutely no idea what ‘goal’ to aim for as we don’t know the level of care Ru will need over the years but absolutely anything would make a difference,’ she said.
You can donate to the family’s cause by clicking here.