Raising a kid with a RARE DISEASE

Parenting can be a stressful, overwhelming and challenging task at the best of times. From conception through to birth, getting to know your baby and navigating what’s best for your child as they grow into a young adult is a big responsibility that requires a lot of patience and determination. For ‘Makeabetsoe Mabaleha, mother of a daughter with a rare condition, parenting presents these same challenges plus many more that most  parents will never experience.

She has a giant trunk – NCM, as it’s called, and lots of satellites (little spots all over her body). Many complications can arise from this disease, which include Melanoma – a deadly skin cancer, specific to patients with a giant nevus. In addition, patients with large CMN and multiple medium CMN are also at a risk for developing neurocutaneous melanocytosis(NCM) which is a proliferation of pigment cells in the brain due to abnormal migration of their precursors. Such patients have symptoms that include: seizures, headaches, and vomiting can occur.

“We realized that our journey with Thloni was going to be different from that of most parents with their children when we saw her in the Neonatal intensive care unit (NICU) in one of the hospitals in Bloemfontein (Medi Clinic). She was a very tiny angel weighing just 1kg, at that point we didn’t know how different she would be”, she stated.

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