Merle Zealley receives award for courage after seeing her family torn apart by rare disease

MERLE Zealley knows what hurt feels like. 

The 87-year-old has lost four family members to the lethal Fabry disease, which she now sees her two granddaughters suffering from.

Her husband Kevin died in 1974, her youngest daughter Sheryl aged 39 in 1988, and eldest daughter Marilyn at Christmas in 1995 aged 48, as well as her nephew. 

“It doesn’t make me happy,” Ms Zealley said. 

“I love my grandchildren while I’ve got them, but I don’t know who will go first, them or me.

“I’ve lost enough, too much for one person.” 

At Kevin’s death he weighed less than 30 kilograms, half the weight he should have been, Ms Zealley said. 

“He ate half a saucer of food a day and spent most of the day on the toilet,” she said.

Fabry disease is a rare hereditary genetic condition caused by a deficiency of an enzyme essential for the breakdown of waste products in the cells of the body, a fat storage disorder which alters the x-chromosome gene. 

Symptoms include, severe pain, burning in the hands and feet, bloating, abdominal pain, diahorrea and reddish-purple blemishes, with other symptoms that affect the kidneys and the heart over time.

“No painkiller worked,” Ms Zealley said. “Marilyn had visible signs since she was as young as three-and-a-half. 

“It was heart-breaking for me to see my daughters in such excruciating pain and I couldn’t do anything to help.” For many years she worked hard to raise money to go towards researching the disease.

“Every June I’d walk into Dr Kathy Nicholls’ office with $5000 – and every Christmas time,” Ms Zealley said.

She would run raffles, sell coathangers and do anything she could to raise money. 

She now lives by herself in a Ballarat retirement village. 

“I don’t sit and dwell on it all, but it can be like dirt under the rug, you lift it up and it’s still there,” she said.

Ms Zealley was recently announced as the recipient of a BRAVE Award, an international program honouring the bravery and devotion of non-professional caregivers.  She received $13,500 to use how she wishes.

Ms Zealley plans to donate $13,000 to various charities and use the final $500 to take her two granddaughters and niece-in-law (wife of the nephew that died) on the Colonial Tramcar Restaurant in Melbourne.

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