As an expectant mother, between stocking up on baby essentials and considering names, the nagging thought of bearing a healthy child can become all-consuming.

Despite routine blood tests indicating that Melanie Langerman’s second pregnancy was advancing well, the Benoni mother found very little comfort in doctors’ assurances.

As her second-born, Bethany’s lack of sleep patterns sounded alarm bells, and tests provided no answers.

While reaching her milestones, Melanie could not shake the feeling that her baby girl may have a genetic disorder affecting her behaviour and which presented mild to moderate intellectual disability.

After a decade of navigating motherhood, with little to no sleep and Bethany’s erratic, often harmful behaviour, which included self-harm as well as hyperactivity and impulsive behaviour, a diagnosis was finally made.

Bethany (19) is one of only two children currently diagnosed and undergoing treatment for Smith-Magenis Syndrome (SMS), in Benoni, Melanie said.

She is in the care of Little Gems residential and respite care in Bedfordview.

Melanie, along with Pat de Klerk, Sandra Hack and Derick Stevens, founded the Bethany Foundation to assist parents of differently-abled children.

“Parenthood comes with a wave of challenges; however, raising a differently abled child can often feel like a war zone,” said Melanie.

“Not only are you trying to come to grips with offering your child the best possible care. Finding treatment that eases symptoms, mounting medical costs and lengthy diagnostic processes for proper diagnosis, takes its toll.”

The board of Bethany Foundation hopes to strengthen its Fearfully and Wonderfully Made (FAWM) parental support group, currently a WhatsApp group, which could evolve into regular face-to-face meetings to offer guidance and advice to parents in the throes of raising a child with special needs.

“Specialist care, treatment, therapy and equipment come with a hefty price tag, often resulting in parents incurring massive debt or having to come to terms with not being able to provide the care their child deserves,” she said.

“Through the establishment of the foundation, we aim to assist families to undertake fundraising projects, making use of our NPO registration to supplement care costs or to be able to purchase essential equipment.”

As part of their ongoing fundraising efforts, the foundation offers decluttering services.

“Whether you are decluttering, burdened with having to clear out a loved one’s home or simply rejuvenating your living space, our service includes the free collection of goods, including furniture and appliances, which are then sold, in aid of the foundation,” said Melanie.

“The differently-abled community is huge. Support is essential for parents as the journey may sometimes feel lonely and isolating.

“Shared experience is invaluable. We hope to establish ourselves to create a meeting ground for families and to assist them through the heartbreaks and celebrations.:

For more information about the foundation, the FAWM support group, or to enlist their decluttering services, contact Melanie on 083 654 1261 or email Melanie.goff3@gmail.com

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