Every birthday is an exciting time for a new parent, but when Iluka turned two – it was a very big celebration.

“We were told that she may not live to two, based on the research that was available at the time,’’ mum, Cassie, said. “When that day came that she turned two, there was lots of joy from all of us.’’

It was only seconds after Iluka was born that Cassie noticed how weak her cry was.

“She sounded like a kitten. They sent her to special care within nine minutes where she was placed under an oxygen helmet and fed through a tube,’’ Cassie said. “Within weeks, her paediatrician noticed she had a heart murmur and some other congenital heart defects. With that she needed medication”

At four weeks, Iluka was diagnosed with Periventricular nodular heterotopia (PVNH). PVNH can affect vital organs – brain, heart, lungs, connective tissue, and the bowel. Iluka attended more than 200 medical appointments before she turned one.

“She can eat, but she doesn’t eat enough for her to put on weight and maintain that weight, so we need to tube feed her,’’ Cassie said. “On a bad day, the simple task of getting up and walking to bathroom is a lot for her. She sounds like she’s run a marathon. These days, she still has a heart condition, but it has improved, and she no longer requires medication, which is fantastic.’’
 
Cassie is passionate about the importance of research.

“The hardest thing about having a child with a genetic condition is not having the answers. Research will help fix that. Hopefully, the doctors can get the answers, and then I get the answers. People don’t understand. They see my daughter and think she looks healthy. Hopefully, raising awareness will help change people’s minds on that.
 
“At the moment there is no cure. It’s just treating the symptoms. Hopefully during Iluka’s lifetime, they can fix the two genes that can cure her.’’

Learn more about PVNH here. You can help kids like Iluka right now by becoming a fundraiserdonating, volunteering or supporting friends who have signed up.

 

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