For Tuula Vintage’s 1.2 million Instagram followers, hers looks like the perfect, enviable life. But there was something she was holding back.
As Mamamia reports, the Australian travel blogger, whose real name is Jessica Stein, is known for posting artful photos from all over the world.
But while she shared a little information about her pregnancy — including a few “bump” photos and a post about being put on bed rest — Stein was careful to maintain her family’s privacy.
Even after her daughter arrived, Stein kept the details vague, only mentioning that they were still in the hospital and looking forward to time with their new baby.
But recently, the new mom explained what has really been going on behind the scenes and why she has been reticent to share the full story behind her daughter’s birth.
In an Instagram post, Stein shared a photo of daughter Rumi Willis Cooper and wrote that she’d always intended to keep her daughter out of the internet spotlight. But now, she was reconsidering that decision:
I have always been extremely private and had planned to keep my pregnancy and children offline, until they could make the choice themselves. 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
Stein then confessed that she and her partner, Pat, desperately needed help:
We have been trying our best to avoid asking for help throughout this tough twelve months, but there comes a point where we are running out of options. If you would like to contribute, or share we would be thankful beyond measure.
As she explained on the linked GoFundMe page, Stein had been on bed rest “from 24 weeks” before giving birth to “the smallest human I have ever held, and … the strongest human we will ever know.”
Rumi suffers from two chromosomal disorders: maternal uniparental disomy 2 and mosaic trisomy 2. Her diagnosis is so rare that doctors estimate there are only two or three other children in the whole world with the same condition.
Even making it to birth was a fight for tiny Rumi, as most cases end in miscarriage, stillbirth, or abortion. As far as experts can tell, the longest any child has lived with Rumi’s condition is age 3. She is also the light of her mother’s life. Stein wrote:
If you happen to see a photo of her or meet her in the Hospital you might see how timid and gentle she is, greeting your face with an enormous smile and bursting with her own unique personality that is larger than herself. She radiates wisdom and energy. She is tiny but she was not born premature. She is one of the rarest girls in the world.
Rumi was born on March 28, and between the pregnancy complications and the weeks spent in the hospital, Stein and her partner simply ran out of money. As she wrote on GoFundMe, they were uncomfortable asking for help, but their savings were gone, and the bills were piling up:
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 […] We have lived off what little savings we had, prioritizing paying the rent for a house we barely get to live in and frozen meals each day while we split shifts in Hospital.
In her request for aid, Stein stressed that the money would be spent on Rumi’s medical needs, with any extra going toward charities and awareness efforts for others in similar (and worse) situations.
Though she may have hesitated to use her internet fame to raise money, the response to Stein’s plea was overwhelming. Within two days, the GoFundMe campaign raised over $200,000 — more than twice what she set as a goal.
Overwhelmed at the response, Stein has since posted a thank you on her Instagram account. But there is something else that has changed.
Though Stein’s Instagram once focused on her wandering spirit, it now states that she is learning to be an advocate for those with rare chromosomal disorders and their caregivers. And she is beginning to think her travel blog was a warm-up for a higher calling:
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.
After learning so much about what it means to care for a special needs child — and after being inspired by her own “little warrior” — Stein now dreams of starting a charity for carers and family of children with rare disorders. As she wrote on Instagram:
“Maybe it’s not my voice that’s meant to be heard, but hers.”