SMA diagnosis ‘shocking and traumatic’

2014-04-26 00:00

ONLY someone who has a child with spinal muscular atrophy can truly understand what these parents go through, says Nadine Drake, whose granddaughter died of the genetic condition in 2007.

Leah, Durbanites Greg and Cara Reilly’s first child, was diagnosed at five months, when she did not attain normal developmental milestones.

“She struggled to lift her head, couldn’t grip and could only cry softly,” said Drake.

The grandmother said such a diagnosis is shocking and terribly traumatic, because SMA is a cruel condition and is always fatal. Some children with a type of the condition that manifests later can live into their teens; many die much younger.

Leah was severely affected, with the muscles responsible for speech, eating and breathing affected. “She could breathe, but was too weak to cough up phlegm. Cara had to suction it for her,” said Drake.

“At one year, Leah had to get a permanent feeding tube in her stomach. She could never speak because her facial muscles and tongue were too weak.”

Leah died from respiratory problems at the age of just 19 months.

Drake said just one SMA child can wrench a family apart, never mind three, as Tania and Gary Clarence had.

After Leah’s death, Cara set up the Leah Reilly Foundation (www.leahreillyfoundation.co.za) to offer emotional and financial support to families with children with the condition.

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