Race to save little girl’s life

 

BEAUTIFUL baby girl Wynter and her parents are in a race against time to raise $3.2 million for a miracle medical treatment which could save her life.

Wynter was only three and a half months old when her Queensland parents Kellee and Jamie Clarkson were given the devastating news their precious daughter had a rare terminal illness, Spinal Muscular Atrophy (SMA) type 1.

An infantile version of motor neuron disease, children do not typically live past two without treatment.

Kellee said it was "heartbreaking" to watch their 16-month-old little girl - who is "happy, cheeky and always smiling", struggling to sit, crawl, or eat as the disease takes hold.

The parents of baby girl Wynter Clarkson are desperately trying to raise $3.2 million for a miracle treatment to save their little girl’s life. Picture: David Martinelli
The parents of baby girl Wynter Clarkson are desperately trying to raise $3.2 million for a miracle treatment to save their little girl’s life. Picture: David Martinelli

Wynter has been receiving a treatment in Australia called Spinraza since she was diagnosed, which is administered via a lumber puncture every four months.

But new one-off gene replacement therapy Zolgensma, which replaces the missing gene which causes the disease, was recently approved for use in the US, could save Wynter's life.

"There have been over 100 kids treated in the US so far," Kellee said.

"We really feel this gene therapy is going to be the best treatment she can get - as parents, all we want to do is give her the best possible chance of living."

But Zolgensma comes with a price tag of more than $3 million - currently the most expensive drug in the world - and must be administered before a child turns two.

Mum Kellee Clarkson with her daughter Wynter, who was barely 3 months old when she was diagnosed with terminal illness called Spinal Muscular Atrophy (SMA) type 1. Her parents have launched a GoFundMe to raise $3.2 million for a revolutionary medical treatment. Picture: David Martinelli
Mum Kellee Clarkson with her daughter Wynter, who was barely 3 months old when she was diagnosed with terminal illness called Spinal Muscular Atrophy (SMA) type 1. Her parents have launched a GoFundMe to raise $3.2 million for a revolutionary medical treatment. Picture: David Martinelli

It means the couple have only months to raise the funds for Wynter's treatment, and have launched a GoFundMe page.

"Jamie and I are the last people to ask for money, but we've swallowed our pride and doing what any parent would," Kellee said.

To help Wynter, Kellee and Jamie visit au.gofundme.com/f/1sy113sg1c



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