Cessnock family signs up to National Stay in Bed Day as part of Global Mitochondiral Disease Awareness Week

Never forget: Jayden, Michael, Savannah and Renae Meyers will don their pajamas for Stay in Bed Day on Sunday. Mrs Meyers' workmates at Coles Cessnock are also raising funds to find a cure. Picture: Fairfax Media

Never forget: Jayden, Michael, Savannah and Renae Meyers will don their pajamas for Stay in Bed Day on Sunday. Mrs Meyers' workmates at Coles Cessnock are also raising funds to find a cure. Picture: Fairfax Media

EVEN when Renae and Michael Meyers’ late daughter Jorja-Rose was at her sickest, they can’t remember her ever crying.

Jorja-Rose Meyers

Jorja-Rose Meyers

Mrs Meyers said doctors suggested when Jorja-Rose was just eight months old that she may have mitochondrial disease and warned her parents they were unlikely to light her first birthday candle.

But their brave and strong-willed little girl fought for another three years to be “the life of the party”, her “cackling laugh” reverberating around their Cessnock home.

“Jorja-Rose was such a fun loving girl and had a million dollar smile,” Mrs Meyers said. “She had the most beautiful personality and it just shone through.

“Considering what she went through, she had every right to cry or complain. But she was always smiling, even during all of her hospital stays and when the nurses were trying to get a drip into her veins.”

The Meyers family will pay tribute to Jorja-Rose during Global Mitochondrial Disease Awareness Week, which started on Monday and concludes with National Stay in Bed Day on September 25.

The fundraising event comes just days before what would have been Jorja-Rose’s ninth birthday on September 27 and the anniversary of her death on October 3, 2011.

“We’ve participated every year since Jorja-Rose’s diagnosis to support other families, raise money for research and one day find a cure,” Mrs Meyers said. “It is a chance to sleep in but also a reminder that these patients’ energy levels are not what they should be and they can’t get up and do what they want to.”

At least 30 children born every week are at risk of developing some form of mitochondrial disease, which is a debilitating and potentially fatal disorder that is the second most commonly diagnosed genetic disease after cystic fibrosis.

Jorja-Rose weighed just 536 grams when she and her twin Jayden were born prematurely at 32 weeks. When Jorja-Rose was about eight months old the family noticed she was floppy, struggled to keep her head up and was not making the same sounds as her brother. She received an official diagnosis at 18 months. “My first thought was I’m never going to be able to take her to kindy, teach her how to drive, walk her down the aisle’,” Mrs Meyers said. “But then we thought ‘We are going to give her the best life we can possibly give her’.

“We made the most of every day and created some precious memories.”

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