Heartbreaking condition means parents set to outlive their children

Four-year-old Charlie and his sister Zara, two, are battling a rare illness that means they are unlikely to live past their early 20s, but their parents are determined to find a cure.

Jeff and Carly Millar, from Wagga Wagga in NSW, noticed their son’s balance was off when he was just two years old, and shortly after they received some devastating news.

Charlie was diagnosed with ataxia telangiectasia (AT) – a rare, incurable disease which shares symptoms with cerebral palsy, cystic fibrosis and muscular dystrophy.

Wagga Wagga parents Jeff and Carly Millar are fundraising for a cure to the rare genetic disorder ataxia telangiectasia, which both their children Charlie, 4, and Zara 2, have been diagnosed with. Source: Carly Millar / Facebook

Mrs Millar tells Yahoo7 she cried for three says after her son’s diagnosis. Her initial reaction was disbelief followed by heartbreak.

However, the family was hit with another devastating blow just two years later. Charlie’s little sister Zara was struggling to learn to walk just after her first birthday.

Doctors confirmed their fears that she also had AT.

Without a cure, the condition will eventually cause the siblings to lose control of their muscles, impacting their ability to walk, talk and eat.

Charlie’s parents noticed his balance was off, and doctors diagnosed him with a condition which shares symptoms with cerebral palsy, cystic fibrosis, and muscular dystrophy. Source: Walk to Everest for A-T / Facebook

Charlie and Zara will also develop weakened immune systems, which will also make them vulnerable to cancer, and they are not likely to live past their 20s.

“It was very difficult to hear that both Charlie and Zara will most likely have this challenging road ahead of them, but we try not to look too far into the future and instead make the most of now, and enjoy it,” Mrs Millar told Yahoo7.

“Their lives, and what the possible future holds all became a blur. The thought of outliving your children is heartbreaking for any parent.”

The disease is so rare, Charlie and Zara are two of only 40 Australian children diagnosed with it.

Charlie and Zara will eventually lose control of their muscles, impacting their ability to walk, talk and eat. Source: Walk to Everest for A-T / Facebook

Until finding out the life-changing news, their parents had no idea they were both carriers of the gene, which causes the condition.

“It is so rare, the chances of meeting someone that is a carrier let alone marrying them and starting family together, just shouldn’t even be possible,” Mrs Millar said.

Through the devastation, Mr and Mrs Millar are remaining optimistic and have re-focused their energy on fundraising, determined to help kelp kids like Charlie and Zara find a cure.

The family are selflessly working hard to support national foundation BrAshA-T, rather than fundraise for their own future medical needs, because they say they are not in a position where we need help at the moment.

The pair’s dad is embarking on a charity hike to Mt Everest with 20 of his mates. Source: Walk to Everest for A-T / Facebook

“Hopefully we have time on our side, and our outcome isn’t what’s suggested,” Mrs Millar said.

“We’d rather put that effort into fighting it, and we will worry about the future as it comes.
We do believe a cure is out there, it just hasn’t been found, yet.”

Through fundraising efforts for national foundation BrAshA-T, the couple have already raised more than $100,000 ahead of a November charity trek to Everest Base Camp, which Mr Millar and 20 of his mates will embark on.

To find out more about the group’s trek in the Himalayas, or to donate, visit the event’s Facebook page; or to donate directly to BrAshA-T visit their website here.