Jessica Stein, who you might know better as the impossibly aesthetic blogger Tuula Vintage, has managed to raise over $120,000 in less than 24 hours to pay for the medical care of her very sick (and very new) baby.
She gave birth to Rumi Willis Cooper in March this year after a difficult pregnancy. Rumi, who was born weighing just 2kg, was diagnosed with the extremely rare chromosome disorder Mosaic Trisomy 2.
“Our Genetic specialists at Sydney Children’s Hospital have told us that there are less than 10 cases in literature,” wrote Stein on the GoFundMe. “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.”
Mosaic trisomy 2 is characterised by having an extra copy of chromosome 2, and has been known to lead to a whole host of issues such as craniofacial abnormalities, growth and motor delay, intellectual disability, congenital heart defects, fibrosis, twisting of the intestines, deafness, abnormal development of the spine and hernias.
Two weeks ago, Rumi underwent surgery for intestinal malrotation (when a baby’s intestines don’t form into a coil), and is now recovering okay – but Jessica writes that every day brings a new medical challenge.
“Most days we can barely hold ourselves up let alone each other. We thought that we could just take each day as it comes and focus on the current battle. But with each new day came a new battle.”
She says that she and her partner Pat are only asking for money via this GoFundMe because they’ve pretty much exhausted all their other options.
“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 2 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 acknowledges that their luckier than most, particularly with Australia’s stella healthcare system, but that they still desperate for funds.
“We wish the world around us would pause and wait for us to catch up, to not have all of these outside financial stresses weighing on us so heavily while we’re focusing on getting her as well, comfortable and independent as possible. It may takes months or it may take years. It may take thousands or it may take more. 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 also gave absolute specifics on how the money would be spent (physiotherapy, medical equipment, private health insurance for Rumi), with anything leftover going towards helping others in need.
“Pat and I have spent a lot of time in hospitals meeting parents, carers and families of unwell kids. Since sharing a little on Instagram I have been inundated with people from all over the world, expressing their empathy, support and similar situations. Pat and I can’t help but brainstorm about how we should try our best to raise their voices any way possible.”
She continued: “We have a dream of starting our own charity based resource focused on the carers and those closest to children with extremely rare disorders, but are aware our current situation leaves us unable to invest what we would like in this,” adding for anyone with ideas or personal experiences to share to get in contact.
Jessica has been blogging for years and years, since before bloggers were mainstream and Instagram was chock full of people trying to build a personal brand.
“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. To find anyone to relate. Maybe if we could help educate even just one person there would be more understanding… I started my blog as an outlet of personal distraction, hope and simply starting my life over after being hit by a car. Maybe all of this travelling and experiences with life were just building me up for something so much more.
“Maybe it’s not my voice that’s meant to be heard, but hers…”
Here’s hoping Rumi and the fam pull through.
