Australian travel blogger, Jessica Stein, has been documenting motherhood online since giving birth to her baby girl Rumi in April, 2017.
The little girl was diagnosed with Mosaic Trisomy 2, with Maternal Uni Parental Disomy 2 – a extremely rare chromosome disorder that has been diagnosed just 10 times.
After the diagnosis, the prominent blogger and her partner had an emotional start to parenthood, and have been in and out of hospital with their daughter since the moment she was born.
Now almost a year on from the birth, Ms Stein has formally introduced little Rumi to the world, thanking strangers who have helped with medical costs and revealing her blog is now a place where she will share updates on Ru and parenthood.
Australian travel blogger, Jessica Stein, has been documenting motherhood online since giving birth to her baby girl Rumi in April, 2017
The little girl was diagnosed with Mosaic Trisomy 2, with Maternal Uni Parental Disomy 2 – a condition that has been diagnosed just 10 times in history
‘Our daughter’s name is Rumi Willis Cooper. She was born in to our lives on 28th March 2017 at just 2.03kgs, and our lives will never be the same,’ Me Stein wrote on her blog.
‘A head of thick brown hair, the spitting image of her daddy but with my own eyes staring back at me. She is the smallest human I have ever held, and she is the strongest human we will ever know.’
Ms Stein said Rumi is ‘timid and gentle’, greets everyone with ‘an enormous smile’ and ‘radiates wisdom and energy’.
‘She is tiny but she was not born premature. She is one of the rarest girls in the world. After a complicated and closely monitored pregnancy we were somewhat prepared for our uphill battle to continue for a little while longer and anticipating a NICU stay.
‘We could never have grasped just how hard it might be for her, and how strong she was to arrive in our world at all,’ Ms Stein wrote (pictured with her partner)
‘But we could never have grasped just how hard it might be for her, and how strong she was to arrive in our world at all.’
Ms Stein said there have been thousands of prenatal cases of her little girl’s diagnosis that ended in miscarriage, termination or stillbirth.
‘They are uncertain of how many others currently share even part of this diagnosis, their best guess is 2-3 in the world. Our journey is probably not going to ever be like anyone else’s, or understood, but it is ours,’ Ms Stein continued.
Ms Stein, who has more than 2.6 million followers on social media, refers to her travel blogging as a ‘past life’ and said that while she had been meaning to introduce her daughter to them for the past year, ‘life happens’.
Ms Stein said there have been thousands of prenatal cases of her little girl’s diagnosis that ended in miscarriage, termination or stillbirth
‘The past year and a half has been a blur. Of hospitals, of fleeting time getting to know each other at home. She has endured many hard days, but we are grateful to truly know how good our countless good days really are,’ she said.
Of all the journeys I have been on, being her mum is by far the best.
‘We are slowly becoming more adapted, more confident and self sufficient in Ru’s ever changing needs. Ru is slowly growing- happier, bigger, brighter each and every day.
‘I’m sure that all parents think that their child is the cutest, funniest little human they’ve ever met but I’m certain that she really is it! Our incredibly strong, incredibly sassy ball of sunshine.’
Ms Stein also thanked strangers who helped them with medical costs via a GoFundMe and revealed plans to ‘pay back and somehow genuinely help those who are in similar situations’.
‘We are slowly becoming more adapted, more confident and self sufficient in Ru’s ever changing needs. Ru is slowly growing- happier, bigger, brighter each and every day,’ she said
‘We are so grateful for the generous help and outreach she has received from strangers from all over the world. It still shakes us,’ she said.
‘We’re still navigating rough waters.’
Ms Stein concluded by saying their days are ‘ever changing’ along with her daughter’s health – the latter she referred to as ‘deeply private’ to them.
‘This used to be a place to share my journeys so I’m not expecting everyone to continue coming along for the ride now that our paths have changed. But of all the journeys I have been on, being her mum is by far the best,’ she said.
Ms Stein concluded by saying their days are ‘ever changing’ along with her daughter’s health – the latter she referred to as ‘deeply private’ to them
Ms Stein gave birth to their ‘little warrior’ baby after a complicated pregnancy
Ms Stein gave birth to their ‘little warrior’ baby after a complicated pregnancy.
‘The first moment we met her we knew that we would go through it all again, a thousand times over,’ she said at the time.
‘I have been offline while living in the hospital as she has been in the special care nursery, and will continue to be happily immersed in her for the next little while but sincerely appreciate everyone’s overwhelming support.’
She documented some of these with her followers and shared the highs and lows of her experience.
The stunning influencer, who is known for her idyllic photographs, first opened up about her rocky pregnancy after revealing that she was seven months pregnant.
‘The first moment we met her we knew that we would go through it all again, a thousand times over,’ she said at the time
In her announcement, Ms Stein shared a black and white snap of herself and detailed the complications she had faced in the pregnancy due to being hit by a car when she was 16.
Ms Stein revealed her pregnancy was an ‘unexpected miracle’ as she wasn’t sure if she would ever be able to have biological children.
‘I experienced multiple pelvic and internal injuries after being hit by a car at 16 with ongoing pain and limitations, and was warned of what might never come to be,’ she wrote.
‘I’ve always wanted to adopt (as my incredible mum was) and my partner and I had been talking about it again just before this unexpected miracle happened.’
Ms Stein revealed her pregnancy was an ‘unexpected miracle’ as she wasn’t sure if she would ever be able to have biological children
Ms Stein explained that she wouldn’t have shared her story and the ‘highs and lows of the pregnancy’ online if she didn’t think it was important.
‘I have been struggling with antenatal depression and hope that speaking out might just help heal myself, and someone else too,’ she continued.
By sharing her story, Ms Stein has touched thousands of parents around the world – many of whom are in similar situations.
By sharing her story, Ms Stein has touched thousands of parents around the world – many of whom are in similar situations
She has more than 2.6 million followers online and used to document her travel
‘That’s the most touching and truthful thing I’ve read in a while. You’re amazing and by the little you share online, I can see how special your daughter is. She truly has wise eyes that tell more than she can say,’ one woman wrote.
‘We are in the same boat with our son who was diagnosed with Partial Trisomy 16q and Monosomy 9p – super rare and not a lot of information to be found,’ another mother added.
‘He’s faced many challenges over his 4 years of life but continues to do so well. The weight you carry around as a special needs mother can be crippling and (for me) the first years were the worst. You’ve got this Momma!!’