Fifteen-year-old Mahlatse Marema has been living with Neurofibromatosis all his life; however, it has reached a stage where he needs a third surgery to save his speech, sight and hearing.

At 9 months old, doctors realised that Mahlatse was suffering from an underlying condition, so they diagnosed him with Tuberculosis. As he continued the treatment, his mother, Magdeline, noticed the medication was defective and Mahlatse’s condition was worsening. When he was three years old, he was finally diagnosed with a rare disease called Neurofibromatosis.

Magdeline described the disease as a genetic disorder that causes tumours to grow in the nervous system. She added that the growth he currently has is affecting his speech, hearing and sight while his nerves are being eaten away.

“There is no cure for it, even if they cut the excess away. But surgery helps relieve Mahlatse from the pressure that the tumours cause,” she said.

In 2017, he had his first surgery, after which he was transferred to another hospital to undergo a second one.

Magdeline further explained that he is desperately in need of his third surgery to relieve the tumour that is growing on his face. There is only one problem, none of the surgeons in South Africa are willing to operate on Mahlatse.

Even though the Marema family now faces this challenge, they have found hope after discovering that a clinic in Cuba offers the intensive surgery. All they need are the funds to travel to the island country and to afford the procedure.

“As a mother, it truly disturbs me. My son is so strong. Even when he is in pain, he tells me it doesn’t hurt because he knows I will cry. We need him to have this surgery. Although there is no cure for what he has, at least he will be able to talk, see and hear,” she said.