Jessica Stein, who you probably recognise more by her blog name 'Tuula Vintage', has opened up about her chronically ill eight-month-old baby and the past 12 months she and her husband have spent fighting to save her.
In March of this year, Jessica and Pat welcomed baby Rumi Willis Cooper after a difficult pregnancy. Rumi, who was born weighing just 2kg, was diagnosed with the extremely rare chromosome disorder Mosaic Trisomy 2.
Jessica says doctors are uncertain about how many other children suffer from the condition but that their guess is 2-3 others in the world. "The eldest recorded age that they could trace is aged 3."
"This rollercoaster started nearly a year ago now, when I was told my water broke last November and admitted to Royal North Shore Hospital on bed rest from 24 weeks," she revealed.
Though they were trying to keep Rumi's health struggles to themselves, the couple decided to ask for help due to the financial struggles that come from both caring for Rumi full-time.
"Pat and I would like to stress how uncomfortable we are to be asking for financial help and want to be completely transparent," Jessica wrote on the Go Fund Me page. "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."
"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."
"No parent should know this feeling. There are so many parts of life that we won't ever be able to understand unless we experience them ourselves, but we can try. I never knew the amount of love, hope, isolation, pain and suffering possible until caring and fighting for a chronically ill bub every day."
Tuula Vintage's 2.7m followers quickly responded and the fundraising page raised a whopping $199k in just over 24 hours, $99k above their goal.
The couple took to Instagram to thank the public for their overwhelming generosity and support, saying: "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."
If you would like to find out more or donate to baby Rumi, head here.