Secunda mother of boy with tuberous sclerosis wants to create awareness about rare diseases

Ms Lelanie van der Merwe kicked off her campaign to create awareness of rare diseases on Friday, 23 February.

She began at Oranjegloed Primary School and hosted a day during which the children could have their faces painted, and colour-in.

She spoke to the pre-school classes about rare diseases.

The next two schools that she will visit are in Bethal and Evander.

Ms Van der Merwe’s son, MC van der Merwe (3), was diagnosed with the rare disease Tuberous Sclerosis and she thus became involved with Rare Diseases South Africa.

Tuberous Sclerosis goes hand in hand with epilepsy and emotional distress, and because this disease is so rare, it is difficult for Ms Van der Merwe to find doctors who have knowledge of this disease and who can help her son.

For more information about rare diseases or Ms Van der Merwe’s next awareness campaign, contact her at 082 385 4743.

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