Johnny and Bethan McElwee are uncertain about their little girl’s future. A just 13 months old, Aviana suffers from Spinal Muscular Atrophy Type One, a rare genetic condition that causes progressive wastage of the muscles.
It’s terminal; most children don’t live beyond the age of two. And while she’s undergoing treatment via a drug called Nusinersen, doctors have told the couple to prepare for the inevitable.
“We know the future is probably not great still,” Johnny McElwee told Nine News.
“What [the drug] does give us is the chance to have quality time, the chance to enjoy this moment.”