Two-year-old Harper Gelmi now thriving after four surgeries to battle congenital heart disease

She was ten-months-old when her parents noticed she had a rash that they thought to be eczema.

"We just went to a normal, walk-in doctor. But as soon as they looked at the rash, they said we had to go to emergency straight away," Ms Gelmi said.

"We were rushed straight through so they could do a scan, and within an hour we were flown to Perth Children's Hospital. Our journey began there."

Before Harper reached her first birthday, she was diagnosed with multiple ventricular spetal defects, a type of congenital heart disease affecting the structure of the heart.

Ms Gelmi said scans showed her heart was enlarged to three times that of a 'normal' child's heart size.

"The doctor explained it as her heart was a colander, as in water would just run through. I think all up there were three big holes, a few medium and a lot of small ones. They didn't know how she was pulling through at that point."

Harper underwent three separate surgeries in February 2020 in an attempt to surgically patch up the holes in her heart.

Ms Gelmi said the first time walking into the intensive care unit at the hospital was like having her insides 'ripped out'.

"It was absolutely devastating to see my daughter, who was so tiny, with tubes coming out of her nose and mouth and huge blood scar on her chest that ran from her neck to tummy.

"She was in a nappy, almost lifeless, with no light behind her eyes."

Harper was required to go back into surgery a second time after it was found her heart was still not coping after doctors first tried to patch the holes.

Ms Gelmi recalled having had just returned to Bunbury to see her son when she got a phone call from the hospital saying she had to return immediately as the doctor did not know if Harper would survive the night.

"Even thinking of that phone call now makes me upset," Ms Gelmi said.

"It was such a rollercoaster of emotions, but I had to keep it together because as a parent, you just do. Your job is to look after someone else' life, your child relies on you."

Ms Gelmi said the turning point of Harper's recovery was 24 hours later post surgery, when Harper's heart rhythm on the hospital monitors suddenly returned to 'normal'.

Harper underwent her fourth surgery in March 2021 to have a pulmonary band removed and three more patches put on her heart.

Ms Gelmi said she had now been hitting milestone after milestone.

"Now it's just about Harper growing up to be a little kid who's life just happened to start like that.

"She needs yearly monitoring, which she will most likely have for the rest of her life, but the doctors are hopeful that the remaining, residual holes in her heart will close up as she grows."

The Gelmi family will be a part of HeartKids annual Two Feet and a Heartbeat charity walk on Sunday, October 17, to both raise funds for and remember children who have lost their lives to congenital heart disease.

Walkers can complete either a 4km or 8km walk, beginning at the Queens Gardens from 9am.

"Harper will be out the front for the walk, probably marching and telling everyone to get out of the way," Ms Gelmi laughed.

"It's amazing to see her where she's at now with a bit more normality in her life. She goes to day care one day a week, goes baby ballet and is now starting to talk. She's also really sassy.

"When you go through this you think, is she always going to be this little kid that can't do things for herself? But seeing her how she is now you realise she's going to be fine. She's definitely going to be a force to be reckoned with."