Baby Aviana’s miraculous progress

The parents of most toddlers have their cupboards locked, candles up high and valuables hidden away. This isn’t the case in the McElwee residence

Parents Bethan and Jonathan McElwee with baby Aviana, aged 20 months, who has been diagnosed with Spinal Muscular Atrophy Type 1, and is currently receiving a new ground breaking treatment Picture: MICHAEL FRANCHI

The parents of most toddlers have their cupboards locked, candles up high and valuables hidden away.

This isn’t the case in the McElwee residence, but parents Bethan and Jonathan can’t wait to baby-proof their home. They are thrilled daughter Aviana, 20 months, has been opening drawers and throwing the contents on the ground.

Aviana was diagnosed with Spinal Muscular Atrophy Type 1 at just three months old and until recently her muscles were wasting away and had limited movement.

“She’d lost all her movement, she only had her eyes and fingers,” Mrs McElwee said. “If you pushed her, she’s literally just fell over. She couldn’t lift her foot off the floor.”

Late 2016, the McElwee family moved to Sydney to access a special drug to help build Aviana’s muscle strength.

“In the last year she’s gradually got stronger and stronger. This drug has halted the deterioration. If the drug stopped, she’d deteriorate and die within a few months.”

The drug is only available to SMA Type 1 patients, and the McElwee family are pushing for it to be made available to people with all types of SMA.

“It’s amazing – from someone who was literally a quadriplegic until now,” Mr McElwee said.

They also want SMA testing to be standard for people wanting to start a family.

Mr and Mrs McElwee welcomed son, Hugo, on January 29. While pregnant, they tested for SMA, and Hugo was cleared of the fatal genetic condition. SMA affects roughly about one in 6000 babies.