OUR BRAVE LITTLE FIGHTER

Like her late sister, little Elana was born with a rare lung condition and can't breathe without a ventilator, but her parents are walking this familiar path with courage and hope

-  MARELIZE GRBICH

SHE looks like a porcelain doll as she sits in her cot, her eyes sparkling with curiosity and her little head tilting to the side as she listens to the conversation around her.

Her room, with a jigsaw puzzle picture on the wall, touches of pink and fairy lights strung from the ceiling, could be any other baby girl’s room. But it’s impossible to miss the plastic tube winding from her throat or the machines beside her bed that keep her alive.

Ten-month-old Elana Hayward has Abca3 lung disease, a rare genetic con- dition that affects tissue deep in the lungs and makes it hard for her to breathe on her own.

She has to be permanently connected to a ventilator but the equipment doesn’t seem to bother her – she rests contentedly in her mom Janine’s arms and her face lights up when she sees her twin brother, Henco, playing on the floor.

The contrast between the two babies is stark. Henco is big and strong, crawling all around the house. Elana is small and delicate, her movement restricted by the tubes.

Janine and her husband, Henrico (both 35), are used to the monitors and the hum and hiss of the ventilator. The couple, who are from Saldanha Bay on the West Coast, have walked this path before.

Their firstborn, Janri, is a healthy 10-year-old but their second child, Arike, was also born with Abca3 and died six years ago when she was just 15 months old.

“Doctors couldn’t tell us much about the condition when Arike was diagnosed,” Henrico says. “They just said it was going to be a difficult road but they’d make her as comfortable as possible.”

Now here they are again – and while nothing much has changed in terms of medical advances, the Haywards at least know what they’re dealing with.