A mom’s story: My daughter has the same syndrome I have

By Drum Digital
24 September 2014

An East Rand mom shares her story of pterygium syndrome.

Jeanetta Jansen van Vuuren and Bianca (15)

Being disabled herself, Jeanetta Jansen van Vuuren was disappointed when she found out her unborn daughter had inherited her disorder. Despite that, at no stage did she ever consider having an abortion.

Bianca and Jeanetta were both born with pterygium syndrome, a condition which manifests with, among others, webbing of the limbs and shortened muscles.

Bianca has webbing running down the back of her legs and walks with difficulty; her one nostril is also malformed so she has difficulty breathing.

“I know my child’s suffering,” says Jeanetta of Brakpan on the East Rand. “She’s a teenager and wants to wear the latest shoes and have a boyfriend, but I know that won’t happen easily.”

Jeanetta’s biggest worry is who’ll look after Bianca if something were to happen to her.

Although she’s spent many a night in tears about the pain Bianca has to endure, Jeanetta says if you’ve made peace with your decision to keep your child the struggle is already won.

“Life for disabled people is hard but I have no regrets about my decision, even if people stare at us.”

-Mieke Vlok

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