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Jessica Stein's Daughter Rumi Diagnosed With Rare Illness

This Little Girl Is Battling 1 of the World's Rarest Diseases — and She Needs Our Help

Fashion blogger Jessica Stein of Tuula Vintage has shared the heartbreaking story of her daughter Rumi's struggle with a rare chromosomal disorder in a touching Instagram post.

"What would you do if your daughter was born with one of the rarest voices of all, and you had an international audience that could be open to listening? There are a whole world of people out there who live in similar, and much worse situations to ours without anyone to hear them," she wrote.

Rumi has been diagnosed with Trisomy 2 mosaicism, a very rare disorder that affects a proportion of cells in the body.

Jessica explained, "Our Genetic specialists at Sydney Children's Hospital have told us that there are less than 10 cases in literature. 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."

Jessica and her partner Pat have launched a Gofundme campaign to raise money to pay for Rumi's treatment and to use Jessica's public platform to speak about rare chromosomal disorders.

In just 16 hours since the launch, the fundraiser has netted more than $122,000, over $22,000 more than the initial $100,000 goal.

Rumi was born on March 28 after Jessica had been on bed rest since late November when her water broke at just 24 weeks. Since Rumi's birth, the family has spent most of their time living in hospitals where she is receiving complex treatment.

Jessica explained on the GoFundMe page that the money will go towards treatments for Rumi and keeping the family afloat at this tough time.

"We feel extremely lucky that we do have a roof over our heads, a small car to share and charities helping us with accommodation while living here in hospital. We are even luckier to live in a country like Australia who provides such incredible public health care. This is so much more than other people have to get by with in times of crisis," she wrote.

"Ru's health is invaluable and all of the money in the world couldn't change her diagnosis and the uncertainty of it, but we would love to be able to afford more specialised care and opportunities for her. 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."

"If you are willing and able to help our family through this time we would be so grateful. More than any words could ever reach . . ." she wrote.

Jessica also has suggestions for people who are unable to contribute financially, from donating blood and plasma to donating essentials to Ronald McDonald House there are plenty of ways you can lend a helping hand to families in similar situations.

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