Mpumalanga MEC for health visits twins with a rare autosomal recessive disorder

The Mpumalanga MEC for health, Sasekani Manzini, visited the family of the Mkhonza twins who have a rare autosomal recessive disorder, xeroderma pigmentation.
Lwanele Sibongile Mkhonza and Lwandile Bonga Mkhonza were born in Bethal Hospital in 2007, but only diagnosed at age two with this condition, which is associated with an increased risk of sunlight-induced cancer.

The purpose of Manzini’s visit to the family on Wednesday August 16 was to support the twins, assess their condition and ensure that they continue to receive treatment from the Department of Health (DoH).
This visit comes after a video was posted online in which their mother, Phumzile Mkhonza, was seeking the public’s assistance.

“Their father died when they were little and I am a single mother. I am unable to get a job, because I need to care for my sons as they need assistance. Due to their condition they are in need of several things. I am struggling to make ends meet. Besides needing assistance with food, medication and funds, we are in need of a house. We currently reside in a shack. Our living conditions are making the situation even more difficult for them as it gets extremely hot inside,” said Phumzile.

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According to the DoH, after the twins were diagnosed, they were referred to the Ermelo Provincial Hospital and then to Steve Biko Academic Hospital, where they are currently receiving chemotherapy.
Phumzile told Mpumalanga News that her sons have undergone several operations to their faces.

“The disorder is very dangerous; some of their body parts are disappearing, mostly on their faces. Lwanele does not have both his eyes; they had to do a procedure for him to have lips. Lwandile’s left eye is affected; he has a prosthetic one. He has a tumour in his right eye and is due for an operation,” she explained.

She said after sharing the video they were visited by various people.

“The Mpumalanga Office of the Premier sent someone to visit us, our mayor came to see us and community members have reached out. We have received so much support and we were promised a house.”

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Manzini said, “The condition demands a multidisciplinary team approach including dieticians, pharmacists, social workers, audiologists and speech therapists among others. The DoH will continue to provide support to the family by making transport available from home to Steve Biko Academic Hospital and back; transport to Bethal Hospital for treatments, ensuring that they are not exposed to sunlight; food supplements and their sunscreen (SPF 50 on monthly basis). It will continue to provide the services of psychological support and debriefing to the family by linking them to psychologists.”

The MEC said she would write to her counterpart in Gauteng as the twins are receiving specialised health services there, and will request support.