‘No inch of their skin must be exposed at all’
BETHAL – A distressed mother is appealing to the community, including business people, for donations in the form of sunscreens, special soaps, and body creams to protect the delicate skin of her boys.
Her sixteen-year-old twins, Lwandile and Lwanele Mkhonza, were born with a rare genetic skin disorder known as xeroderma pigmentosum (XP). This condition renders them highly sensitive to sunlight.
Phumzile Mkhonza (43) shared with the paper that she has been unable to work since her children were diagnosed with the condition in 2009. “To make things worse, their father died in the same year, and I have been taking care of them by myself,” she said. “This has affected me mentally because I have little support structure. I am unable to work because I need to take care of my children. I am the only one that understands their condition.”
She further disclosed that their only source of income is the care dependency grant from the government. “We do not have our own vehicle to facilitate transportation to various medical appointments.”
It was also established that the twins can only walk outdoors in the afternoon, at night, or during rainy weather to avoid the sun. Exposure to sunlight results in severe burns for the Mkhonza twins, irrespective of the duration of exposure.
“Their skin darkens significantly and cracks under the heat. To be outdoor, they require UV protective suits,” explained the mother. “My twins’ skin began changing when they were two years old. We sought consultation from numerous hospitals until they were diagnosed at Steve Biko Hospital in Pretoria. They are currently receiving treatment there.”
Apart from sun sensitivity, XP predisposes individuals to other serious illnesses and subsequent disabilities.
In 2017, the twins participated in a study conducted by the University of Pretoria, revealing that Lwandile, Lwanele, and other children with similar conditions faced a high risk of skin cancer by the age of 10. They are also susceptible to other forms of cancer.
Phumzile also revealed that Lwanele has undergone numerous surgeries, resulting in the loss of both eyes to cancer. “He now lives with only one nostril, and his lips have been eaten by cancers. He has undergone over 10 procedures on his head and tongue, and can no longer speak properly as a result.”
Lwandile has lost his left eye to cancer as well. Currently, he has a tumor in his right eye, awaiting the results of an MRI scan. He has also undergone multiple surgeries on his head and tongue. The challenges of raising children diagnosed with XP have left Phumzile with little to no social life.
Her daily routine revolves around shielding the twins from the sun’s harsh rays. This includes assisting them in bathing with specialized soaps and applying sunscreen with SPF 50 or higher every two hours. And because the boys are frail, they need help with everything they do,” she added. “Lwandile and Lwanele don’t have any formal education. They last attended Grade R and that was the end of their school journey.”
Phumzile mentioned that it’s not only sunlight that affects them; even bright light bulbs can irritate their skin. The family opts for low-wattage bulbs that emit dim light and pose no harm to the twins. “Their skin itches and gets very painful, and irritable and this is even with all the creams and protection applied to them. No inch of their skin must be exposed at all,” she concluded.
Currently, the family of three resides in a one-room shack, partitioned with curtains while awaiting completion of their government-provided house. Living in a corrugated iron shack exacerbates the twins’ condition, as such structures can become excessively hot, especially during the summer months. For any form of donation, Phumzile Mkhonza can be contacted on 076 311 7140
