Debut novel places spotlight on severe intellectual disability

Hedi Lampert

Hedi Lampert, of Constantia, has written a debut novel inspired by her aunt’s struggle with a genetic condition that causes mild to severe intellectual disability.

Hedi grew up with an aunt who suffers from Fragile X syndrome and she has spent the last 15 years researching it.

Those with the full mutation often have developmental delays, attention problems, hyperactivity, autism, and behaviour problems.

Those who are pre-mutation carriers of Fragile X may experience cognitive or emotional challenges, although less severely.

The character, Vi, in Hedi’s book, The Trouble with my Aunt, is based on her mother’s sister.

Born in 1933, her aunt grew up in a time when children like her were viewed as “retarded”.

The education system at the time had no place for them and their families had little to no support, so institutionalisation in facilities for the mentally handicapped was seen by many as the only viable option.

In Hedi’s grandfather’s will, he states that his daughter should never be institutionalised and she never was.

Hedi’s grandmother ensured her daughter was impeccably groomed, well-mannered and generally socially presentable. She also never gave up trying to teach her to read and write.

It was only in the mid to late 1980s that the family was made aware of Fragile X syndrome.

Hedi was tested for it, as was her mother, grandmother and aunt.

At the time, their blood was sent to a laboratory in Belgium, as no tests were available in South Africa.

DNA testing for FXS was only made available in South Africa in 1994.

Hedi’s grandmother was found to have a pre-mutation (she was a carrier) and her aunt, a full mutation with all the symptoms of Fragile X syndrome.

Hedi and her mother both tested negative.

After Hedi’s grandmother died, her aunt became her mother’s responsibility.

Having devoted her entire life to ensuring that her intellectually challenged younger sister was taken care of, this was a natural progression for her, but it was not easy.

What troubled Hedi’s mother even more, was the thought of not being around to care for her sister.

“She confided to me on more than one occasion that she was terrified to be the first of the sisters to die, lest someone else have to take on the burden of my aunt’s care,” says Hedi.

She says the sad but honest truth is that the fallout of intellectual disability is not restricted only to those who carry the problem genes, it affects parents, siblings and next of kin in a number of negative ways.

The book is told through the point of view of the character, Leah Fine, a 32-year-old, single, career woman whose life faces upheaval by an unplanned pregnancy.

Leah fears her own child may be impaired, just like her aunt, but how does she test for a problem when she does not know what the problem is?

In a frantic search to discover the truth about her aunt’s condition, Leah learns she may be a carrier of the inherited genetic mutation – Fragile X. Not only must she wrestle with the heart-breaking option of termination, but, in her search for answers, she uncovers secrets that alter everything she has come to know and trust.

The book is set within the context of traditional Jewish family life, during the last 30 years of the 20th century.

Hedi says the book is written with both humour and insight, while offering a brutally frank account of the emotional and social dynamics of caring for an intellectually challenged relative, particularly during an era when little or nothing was known about the particular condition or its causes.

Hedi is also a magazine editor, writing coach, professional speaker, voice-over artist, photographer, ceramicist and food stylist.

The Trouble with my Aunt will be available on Amazon, and can also be purchased at most book stores.