Finding cures for children's genetic diseases

Indi's Story

indi1-(2).jpgIndiana Dawkins was 10 days old when mother, Megan, and father, Josh, noticed something wasn't right with their second-born child.

Indi was struggling to breathe so she was taken in an ambulance to the Royal Children's Hospital in Brisbane and she was diagnosed with RSV Bronchiolitis.
Indi’s progress was closely watched, and upon the sixth day in hospital, she had not improved.

A cardiologist was brought over from Mater Hospital to conduct a heart scan, and Indi was immediately transferred to Mater ICU.
The following day, she was diagnosed with Dilated Cardiomyopathy – a disease of the heart muscle. She was put on medication, and her parents were told to watch and wait. They were also warned the situation “didn’t look good”. Megan says the family were shocked.

“We’d gone into thinking she had this horrible virus, but then to find out she had a life threatening disease was heartbreaking.”

On top of her disease, Indi was suffering from PDA – which meant the ductus arteriosus, a fetal blood vessel, didn’t close as it does with other newborns, three days after birth.

“Watching and waiting was agonising. We had no idea which way it would go,” Megan says.

Doctors said the open hole in Indi’s heart was likely keeping her alive because it enabled the blood to flow, but they warned it would need to be closed otherwise Indiana would die. However doctors were concerned that surgery would deliver her the same fate. Almost two months into her life, the open heart surgery went ahead.

Megan and Josh were warned surgery would make their baby very sick, because once the duct was closed, her heart would need to perform properly. But Indi remained stable after surgery – she was put on ECMO (a heart a lung life support machine) for 24 hours following surgery. She also came off that successfully. Indiana remained in hospital for two more months to slowly wean her off oxygen support and to learn to feed properly.
Megan says the experience was emotionally and physically draining.
“It was hard being away from Indi’s older brother who was a toddler, because I couldn’t be in two places at once.”
Indi is in kindy now. She’s small but slowly putting on weight. When she sees a picture of her as a baby in hospital, she says ‘I had a sick heart’. But today, she’s a vivacious, feisty girly girl who loves the spotlight.
Indi is continuing to be treated for her heart condition. She’s still on medication, and receives a six-monthly check-up with her doctor, who reviews the medication intake at each appointment.

However, Indi’s health recently took a turn for the worst when doctors discovered she had been suffering from strokes which were turning into seizures. Tests revealed Indi had tested positive for a very rare genetic mutation called ACTA2, which is unrelated to her heart condition.

This causes Indi to suffer from Moyamoya Disease – a rare disease in which certain arteries in the brain are constricted, which was causing her seizures. Indi will undergo more testing to determine what surgery will be needed. The journey is far from over. Megan says the thought of her daughter relapsing is always in the back of her mind.

“I have this underlying peace that she is here for a reason," she says.

One day we will beat childhood diseases. Until then, we need your support.​

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