In celebration of Rare Disease Day (February 28), the learners of Atlasville’s Mindpro Academy donned their brightest colours to celebrate their peers and recognise what makes them unique.

Of the school’s 130 learners, from three months to Grade 12, 13 students are living with rare diseases.

It is estimated that 4.2 million South Africans have or will be diagnosed with one of 7 000 known rare diseases and congenital disorders in their lifetime.

“As a parent of a child living with a rare disease, I am aware of the challenges parents face in not only having them correctly diagnosed but finding a treatment plan that ensures that their little one can enjoy a fulfilled life,” said principal Madelein Venter.

“We have been privileged to watch children with rare diseases blossom into avid learners and become part of a school culture that looks beyond the diagnosis, instead seeing a lifelong friend.”

Living with hypohidrotic ectodermal dysplasia with immune deficiency, Somai Venter (13) said that although her diagnosis does not define her, she is proud to be an ambassador for children living with rare diseases.

“Like zebras, our stripes are different. Some of us have curly hair, others have blue eyes. We are all different, and with a rare disease, some of us develop differently,” she said.

“One thing remains the same – we are humans looking to live a life filled with love, acceptance and care. I am proud to be part of a school where we celebrate our uniqueness.”

For more information about rare diseases, for support or guidance, go to www.rarediseases.co.za

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