Syndrome needs awareness

By Jessica Howard

At just three-years old, Breana Zois is one of 4,000 children born with DiGeorge syndrome each year.

The syndrome, otherwise known as 22.q deletion syndrome, has no cure and is caused by a small missing piece of the 22nd chromosome.

Little Breana, from Bacchus Marsh, has been living with the disorder since birth. Her mother, Nicole Zois said the syndrome can cause close to 200 mild to serious health and developmental issues.

“For Breana, it affects the whole left side of her body,” she said.
“So if you start from the top, she suffers from epilepsy, hypoplastic left heart disease and immunosuppression, meaning we have to replace her cells weekly to ensure she has some sort of an immune system”.

Mrs Zois said the chromosomal disorder is believed to be the second most common genetic disorder behind Down Syndrome.
“Yet most have never heard of it,” she said.

Earlier this year, an educational seminar was held by the 22.q Foundation in Perth. Mrs Zois said she contacted the director, who said to hold a seminar in Victoria, but funds would need to be raised in order to cover the cost of guest speakers and venue hire.

“We need to raise about $4,000,” Mrs Zois said.
“I’ve only lived in Bacchus Marsh for about four-months, which has made it hard to raise money as I don’t have any contacts yet. A few people have donated a couple of things to be raffled off, but I’m now looking for that last little bit of funding so that we can set it all up”.

Mrs Zois said the purpose of the seminar was to educate and raise awareness.
“It’s really daunting to find out your child has been diagnosed with 22.q and a seminar like this will provide information for parents, carers and families on what the disorder is, what research is out there and any new treatment options.

“It’s also just about raising awareness of what 22.q is and how many families it affects”.

If sufficient funds are raised, the 22.q information seminar will be hosted at the Royal Children’s Hospital in Melbourne in 2018.
To donate, contact Nicole Zois on 0413 148 351.