Lwandile and Lwanele Mkhonza, 16-year-old twins from eMzinoni, are suffering from a rare autosomal recessive disorder known as xeroderma pigmentosum (XP) that leads to aggressive skin and other types of cancers.
“This cancer eats their flesh to a point where Lwandile is partially blind in one eye and Lwanele is completely blind,” explained their mother, Phumzile Mkhonza.
There is no cure for this disease. The boys were diagnosed with XP when they were only two years old.
“My boys are in constant pain. At the moment both have tumours inside their mouths, so they can’t eat properly,” said Mkhonza.
Although the twins are not supposed to be exposed to any kind of heat, they were huddled in front of a coal stove when Ridge Times arrived at their two-room shack on an icy winter morning.
There was a look of despair on their faces and they could not speak.
They appeared frail and needed support to move around. This is mom Phumzile’s full-time job.
Lwandile’s right eye and the left side of his nose have been removed due to cancer. He now has an artificial eye.
He has had more than six operations on his head and tumours in his tongue were removed thrice. Lwanele lost both his eyes from cancer and the left side of his nose.
“He had 10 operations in his head and his tongue was cut five times to remove the tumours,” Mkhonza told Ridge Times.
Both twins had tumours removed in January, but blood tests revealed that the tumours have returned.
The twins can only eat soft foods since their tongues have been cut so many times.
They have to use sunscreen three times a day so that they do not get burned by the sun.
Their skin is sensitive to the sun’s UV rays and even just two minutes in the sun can badly burn them.
The twins go to Steve Biko Hospital for dermatological, ophthalmic, oncological and radiation treatment and a variety of blood tests and blood screenings.
This culminates in the boys not being able to attend school because there are no local schools that can accommodate them.
“The special school they need is very expensive, and I will have to fetch them every Friday. I would appreciate any help to school them at home,” explained Mkhonza.
Mkhonza is struggling to keep everything afloat after her husband’s death several years ago.
She has turned to the newspaper to ask for assistance from any good Samaritan who can help improve their living conditions.
Lwandile and Lwanele get a care grant from the government on which the family has to survive.
The family is asking for help with soft foods for the twins, special sunglasses and financial help to consult an international specialist next week.
The twins will be seeing a dermatologist from overseas who is in Durban.
Their trip from Johannesburg to Durban on June 18 is paid for, as well as their accommodation, but mother and sons are in dire need of help to get from eMzinoni to Johannesburg and back.
If you want to help this family, contact Phumzile Mkhonza on 076 311 7140.
“Any help will be appreciated,” said Mkhonza.
