SAVE A YOUNG LIFE: Kellee Clarkson with her daughter Wynter who has been diagnosed with a terminal illness called Spinal Muscular Atrophy (SMA) type 1.
SAVE A YOUNG LIFE: Kellee Clarkson with her daughter Wynter who has been diagnosed with a terminal illness called Spinal Muscular Atrophy (SMA) type 1.

A $3 million race against time to save young Wynter

A CENTRAL Queensland mum is asking the region to support doting parents in their race against time to raise $3.2 million for a miracle medical treatment which could save their daughter's life.

Wynter Clarkson, "a cheeky and beautiful little girl" was three and a half months old when her parents, Kellee and Jamie Clarkson, were given the devastating news she 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 years old without treatment.

Wynter has been diagnosed with a terminal illness called Spinal Muscular Atrophy (SMA) type 1.
Wynter has been diagnosed with a terminal illness called Spinal Muscular Atrophy (SMA) type 1.

"Words cannot even begin to explain the pain we felt," Mrs Clarkson said.

"We went from being the happiest we have ever been in our lives to the saddest we have ever felt - it's indescribable."

Wynter has received a treatment called Spinraza since she was four months old, which is administered via a lumber puncture every four months and will be needed for the rest of her life.

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

Mrs Clarkson said the treatment, which comes at a cost of $3.2 million, needed to be administered before her second birthday, less than six months away.

"We need community involvement because we just cannot do this alone," she said.

"We need the support of Australia as we feel this will give us a much better chance of raising these funds."

Jamie and Kellee Clarkson with baby Wynter.
Jamie and Kellee Clarkson with baby Wynter.

An old colleague is asking everyone across the region to dig deep and support the family.

Shari Armstrong worked with Mrs Clarkson in Glenden before the young family moved to Toowoomba.

"Finding out about Wynter was so sad," she said.

"It is heartbreaking to think of what Jamie and Kellee are going through.

"It is bad enough when your child is ill, but to find out you need a ridiculous amount of money to save her life and only a short time for her to have that one-off treatment, devastating."

Mrs Armstrong is hoping the community will help Wynter live past her second birthday.

The family have so far raised more than $60,000.

To help Wynter, Kellee and Jamie visit the Go Fund Me page


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