Eve Doherty'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.
Eve Doherty'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.

It costs $100 a day to keep our baby alive

When Georgie Doherty looked into the eyes of her beautiful baby girl Eve Florence, she knew she had fallen in love.

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.

HOLDING ONTO HOPE

"We were unsure whether these interventions would keep her alive. She was immediately ventilated with a tube down her throat and supported by an oscillator which did the breathing for her at 500 (tiny, shallow) breaths per minute," she added.

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.

Eve has been diagnosed with interstitial lung disease (chILD) and severe pulmonary hypertension (PHA).

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.

Eve's rare condition is one in three million. Image: GoFundMe

'IT'S A BATTLE'

"There is no known cure for Eve's condition. There is also no comparable case like her, no 'proven step by step' treatment and no way of knowing the severity, the rate of progress or outcome," admits Georgie.

"She is currently receiving low-flow oxygen of 1-2 litres per minute and trailing medications. We go back to the Royal Children's Hospital every fortnight for appointments and every 4-6 weeks for a week at a time for IV medication.

"It is a battle we never thought we would be faced with, but we have had great comfort in worshipping our way through it with gratitude and prayer and an expectant heart of good outcomes.

"We hold our breath at every appointment, scan, test for any indication that she is improving. It is unlikely to see a significant improvement in her stats in a short period of time and hard to know if the medications are working immediately.

"The most certainty we have to cling to is knowing that this recovery is 'all up to Eve', as her consultant put it, and her body growing stronger to defeat this disease."

There is no cure for Eve's condition. Image: GoFundMe

 

'WE CAN'T BELIEVE HOW HAPPY SHE IS'

But despite Eve's tragic condition, Georgie says she's such a happy child.

"We can't believe how happy and giggly she is despite all of her energy spent focusing on breathing. It is bizarre to know she is so unwell when you look at her.

"She makes us laugh daily and is quite the demanding, cuddly boss baby! We completely love being her mum and dad," she added.

Right now, Georgie is focusing her time and energy to Eve's GoFundMe page where she hopes to raise money to help pay for the costly equipment to keep Eve alive.

At the moment each portable oxygen tank costs $28 and lasts only seven hours.

"Since having our baby and spending time in NICU, we have experienced many miracles of healing. These have been beyond the understanding of doctors," says Georgie.

"It's our jobs as her parents to believe that Eve's life will continue to be a miracle and full health will be restored. Eve wasn't expected to survive her first night. We know she is meant to be here, to grow up and share her testimony of how she overcomes this.

"She is already making a significant contribution to this world, to genetic research and as an inspiration to other families with sick children."

You can support Eve and purchase products from the Breathe For Eve Etsy shop.

This article originally appeared on Kidspot.com.au and was reproduced with permission.

News Corp Australia


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