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Parenting

17th Oct 2017

Mum’s heartbreaking plea for baby with extremely rare condition

'Most days, we can barely hold ourselves up.'

Jade Hayden

rumi

Rumi Willis Cooper is just seven-months-old.

She was born to lifestyle blogger Jessica Stein and her partner Patrick earlier this year with a rare medical condition, Mosaic Trisomy 2, with Maternal Uni Parental Disomy 2.

According to mum Jessica, the condition has only ever been seen in 2 or 3 other children in the world.

None of them lived past the age of three. rumi

Jessica and Patrick have taken to GoFundMe to make a plea for treatment for their daughter.

In a heartbreaking post, the new mum details the tough pregnancy and birth she experienced bringing Rumi into the world, and how despite how normal her daughter looks, she is “one of the rarest girls in the world.”

“A full head of brown hair, the spitting image of her daddy but with my own eyes quietly staring back in to me. She is the smallest human I have ever held, and she is the strongest human we will ever know.

“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.”

The couple said that they do not feel comfortable asking for money, but at this stage, with just $202 in their bank account, they don’t have another choice.

“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.

“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.”

Jessica and Patrick set their goal at $100,000.

On their page, they detailed exactly what treatments the money would be going towards.

It included health cover for Rumi, physiotherapy, speech therapy, occupational therapy, medical equipment, as well as additional funds to contribute to various charities and hospitals.

rumi

They also asked people who couldn’t afford to donate money to consider giving blood, plasma, towels, toiletries, or even a smile or a coffee.

The couple has already surpassed their goal, having raised over $162,000.

Images via GoFundMe.