Fresh air at last for young Alexis

When Alexis Downie was just six months old, her mum knew something was amiss when she couldn’t bear any weight on her legs.

Kristi Deakin helps daughter Alexis with the cough-assist machine. Picture: EDDIE SAFARIK

WHEN Alexis Downie was just six months old, her mum knew something was amiss when she couldn’t bear any weight on her legs.

It was another 18 months before doctors sent the Bridgewater family for testing which confirmed Alexis had spinal muscular atrophy.

“Because she was 12 weeks premature, I kept getting told she was just slower to do things, but I always thought there was more to it,” mum Kristi Deakin said.

The now four-year-old is still unable to walk and requires the use of a cough assist machine, which works by expanding and strengthening her lungs and clearing them of fluid.

Ms Deakin said she was making weekly trips to the Royal Hobart Hospital to use their machine, but now Alexis has one of her own for home.

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The family was the first in Australia to receive funding from not-for-profit organisation Youngcare’s new grants for under 18s.

“Without the cough assist machine, she would probably continue to get worse and end up completely wheelchair-bound, unable to do anything for herself,” Ms Deakin said.

“She was always getting chest infections, pneumonia, colds — every cold we’d end up in the hospital.

“Now, we don’t need to go to the hospital when she gets sick. We wait and treat her at home and if it gets too bad we seek professional help, but most of the time it’s just clearing her lungs and treating the symptoms and she’s fine.”

Ms Deakin said as far as she was aware, Alexis was the only Tasmanian under 18 who suffers from spinal muscular atrophy.

“There’s still a lot of unknowns — she does ask questions like ‘why can’t I walk and one day will I?’ Those are questions I find very hard to answer,” she said.

Youngcare is opening up their Y Kids Grants to other children with a disability and their families, with the first round opening in October.