“Love was my driving force”

What if you needed to raise $3.2 million to keep your child alive? That was the life-or-death predicament for one Queensland family, who nonetheless secured the world’s most expensive drug to save sick babies right across Australia.

- GARY NUNN

It’s a bright winter’s day in Toowoomba, Queensland, and three-year-old Wynter Clarkson is atop a tiny plastic slide. She’s snuggled up warm in a pink jumpsuit and giant grey socks. Tight ringlets of blonde hair are pulled into a mini bun on her head and her eyes are wide in anticipation of the upcoming descent.

“Push! Weight forward!” some adults encourage at the bottom. Wynter’s mum, Kellee Clarkson, 31, hovers, an arm either side of Wynter. She has the same tight blonde ringlets in the same bun, and the same look of anticipation.

After some bum wriggles, Wynter hits the descent to rapturous cheers. She looks around in joyful surprise at the applause, then claps on her own thigh to reward herself. It’s almost as if she knows that what she just did, almost completely by herself, is nothing short of a miracle.

“She’s my little ratbag,” Kellee says fondly of Wynter (or Wynnie, as she calls her), who babbles loudly and happily in the background as we chat. “She’s a real outdoors girl, and her cheeky attitude is emerging – she’ll say ‘no, no, no!’ when she doesn’t want to sleep.”

It’s little things, like picking flowers together in the garden, that Kellee cherishes now because of how close she came to losing Wynter. In December 2018, Wynter Clarkson was diagnosed with spinal muscular atrophy (SMA), a degenerative muscle-wasting genetic disorder that attacks the motor neurons in the spine.