World news – « Knife to Heart »: The family’s struggle after the denied $ 10 test

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Geography has tragically played a role in why two little girls named Oakley with the same devastating motor neuron disease will lead very different lives.

New parents in NSW, but not Queensland, are offered a simple $ 10 test for newborn heel stitches for spinal muscle wasting.

If diagnosed early, before symptoms appear, the disease can be treated with a drug called sprinraza and children can thrive.

Without the test, a later diagnosis means that the motor neuron damage is irreversible and the children can go downhill quickly, with loss of movement and unable to breathe or even swallow.

Oakley Atkins was born in NSW last year and was diagnosed by the heel-stitch test at one week of age.

It has been treated and thrived, reached its milestones, and a bundle of energy.

Oakley Gough is a Queenslander, and her case should be a copy of her little interstate namesake, but she hasn’t had the test and needs help with breathing and feeding with just five months as her tiny muscles weaken.

The stark contrasts in the two Oakleys’ history underscore the shocking void in birth screening in Queensland, and medical professionals, MPs and parents are calling for the test to be introduced immediately in the Sunshine State.

Historically, the prognosis for children born with SMA has been poor. Many children are likely to die, but new treatments are emerging and parents see a glimmer of hope for their babies.

Sprinraza, which is injected into the spine, successfully slows the progression of the disease.

Oakley Gough’s mother, Kate Gough, of Murarrie, Brisbane, said: « Early diagnosis is critical and so (husband) Grant and I are fighting in Queensland for the heel-stitch test to be introduced.

« SMA can happen to anyone. We had no idea about the disease or how common it actually was.

« We were completely devastated by the diagnosis, but it was a knife in the heart to find out that a simple test could have made all the difference in our baby’s life. »

Ms. Gough was linked to Karah McLeod of the Hunter Valley when they both discovered their babies were born in the same year, had the same name, and had the same terrible diagnosis.

« Seeing Karah and Jack’s little Oakley do so well is a double blow, » said Ms. Gough.

« ] We are of course very happy for them, but our Oakley is going downhill fast. »

Within an hour of being diagnosed, the dead was on a feeding tube and is now on respiratory assistance.

« We didn’t have much hope for Oakley, but we know more about the treatment and have become more hopeful that we have lasted longer than predicted, » said Ms. Gough.

Mr Gough told The Courier-Mail that the shock diagnosis and deterioration of Oakley resulted in the couple seeing a psychologist.

« It just seems so sad that a $ 10 test could have made all the difference in Oakley’s life, » he said.

« This could happen to any parent and I urge Queenslanders to sign the petition to do this screening. »

“It just seems so unfair for them to go through things so much harder than necessary. SMA is the most terrible disease, and the screening gave us tremendous hope – hope that we can keep our Oakley’s body from deteriorating. You it’s good and we’re so very, very grateful, « she said.

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