Raising money for CHARGE Syndrome patients

DETERMINED: Alison playing hostess at one of her high tea fundraisers for the CHARGE Syndrome Foundation.

DETERMINED: Alison playing hostess at one of her high tea fundraisers for the CHARGE Syndrome Foundation.

Last October Alison Mckerlie's life was changed forever when she was diagnosed with CHARGE Syndrome.

Not because of the diagnosis itself, but because she finally had answers after a lifetime of questions.

A rare genetic condition, CHARGE is extremely complex and impacts on many areas of the body causing defects or disabilities in sight, hearing, breathing, digestion, heart function, balance and many more.

The Syndrome was only recently discovered in 1981 after the same cluster of features was recognised in a number of children.

In fact, it is so rare that only one in 15,000 people are affected worldwide.

Although Alison was born with CHARGE Syndrome, she spent years back-and-forth with doctors before her condition was recognised.

Alison is now determined to bring more attention to the underrepresented syndrome.

"I only have minor disability in some of these areas so I have decided I will put my energy into awareness raising and fundraising to support other Chargers throughout Australia and New Zealand," she said.

"I just want to help other families. You see stories of parents with babies who have CHARGE and are really struggling to get by and by fundraising, the foundation will be able to help those families and they will get some relief."

All proceeds from Alison's fundraising efforts will go directly to the CHARGE Syndrome Foundation.

She has already been selling greeting cards featuring photographs of locations around Port Augusta and some wildlife scenery from the Flinders Ranges.

"Other fundraising throughout the year will include car boot sales and trading stalls at community events like the Wharfest," Alison said.

"I'm also going to be offering high teas as a fundraiser for any groups in the community who would like to show their support in that way."

To coincide with her fundraising efforts, Alison is planning to organise some guest speaking events at service and community clubs to increase awareness about CHARGE Syndrome. 

"I want to spread awareness, I grew up thinking I was the only one like this," Alison said.

"It's not nice and I just don't want to see anyone else going through that."

Alison can be contacted on 0428 425 788.