$100 a day to keep our baby alive

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Eve’s rare disorder has her family scrambling to find the money to keep her breathing. She suffers from a one-in-a-million genetic condition.

But despite a very normal pregnancy and no health concerns during scans, Eve had a very traumatic start to her life.

“Within the first 72 hours of life Eve had ECGs, brain scans, CT scans, X-rays, chest drains, nitric oxide, a myriad of injections and drugs, morphine, adrenaline, IVs and a number of tubes draining her lungs and feeding her,” Georgie said.Eve has a rare disorder that means she can't breathe without assistance. Image: GoFundMe“We were unsure whether these interventions would keep her alive.

Born with a one-in-a-million genetic condition affecting Eve’s lungs and heart, the six-month-old baby girl has been dependant on oxygen since birth and cannot breathe without artificial assistance.This condition in newborns is extremely rare, with three cases per million diagnosed. It is a name given to a collection of possible diseases that affect the lung lining and the body’s absorption and transportation of oxygen.

For Eve, this is thought to be caused by a genetic mutation to the TBX4 gene. Eve’s TBX4 gene sequence is the only reported sequence worldwide.

 

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