19 September 2018


THE OFFICIAL BOKONE BOPHIRIMA GOVERNMENT NEWSPAPER

Young Brits XD patient needs urgent help  

by: Obakeng Maje   date: 25 May 2018

The future of a six-year-old boy from Letlhakaneng village near Brits is hanging in the balance after he was diagnosed with a rare skin disorder known as Xeroderma Pigmentosum.
 
Xeroderma pigmentosum, which is commonly known as XP, is an inherited condition characterized by an extreme sensitivity to ultraviolet (UV) rays from sunlight. This condition mostly affects the eyes and areas of skin exposed to the sun. 
 
Paballo Mabetwa now needs a sophisticated area to play in order to protect him from any further skin disorders. Because of his XD, his skin cells’ ability to repair damage caused by ultraviolet light is deficient. 
 
Paballo’s mother, Sarah Mabetwa, told Semphete that the family does not know where to seek help because they stay in a three-roomed shack that is not ideal for her son’s condition. The skin condition is already spreading to other parts of Paballo’s body.
 
“My son was diagnosed with skin cancer while he was nine months old. He is not allowed to play in the sun because the sunlight affects his skin. We need help as the situation is terrible. If there is any good Samaritan out there, please help us with transportation and to build a refined area for Paballo to play during the day.
 
“He was admitted to Dr George Mokhari Hospital in Ga-Rankuwa near Pretoria. Now he is getting treatment from the hospital, but doctors said there is nothing they could do to stop the cancer from spreading to other parts of his body. Paballo underwent an operation two weeks ago in which doctors removed his left eye,” the mother said.
 
Unemployed Sarah said they are faced with financial constraints as Paballo’s father is a taxi driver and does not earn much. Her wish is to take Paballo to specialists at private hospitals, but that would be too expensive.
 
“It is so difficult to see you child suffering on a daily basis, but you feel helpless. I could see that my son is staring at his death and it’s just a matter of time. But I still have hope and believe that he can beat cancer. My son cannot even attend school because of his condition and this affects me emotionally,” Sarah said. 
 
A dermatologist at Tshepong/Klerksporp Hospital, Olehile Kgabale, said Xeroderma Pigmentosum is a skin disorder caused by the defect in the DNA excision repair mechanism, leading to marked sensitivity to ultraviolet and multiple skin cancers.
 
“All these disorders present with varying degree of photosensitivity in infancy or childhood. In each instance, the differential diagnostic considerations include most of the disorders, depending on the associated findings such as premature aging or mental retardation. In photosensitivity in infants, erythropietic porphyria and other forms should be excluded at birth, neonatal lupus erythematous must also be considered,”
Kgabale said. 
 
He added that even though the disease is incurable, those who are affected must avoid being exposed to the sun.
 
“Those children who are born with the Xeroderma Pigmentosum cancer are called Moon children. They can only be able to play under the mild environment, but if they get into conduct with the sun, their skin cells will be damaged by the sunlight. The lifespan for them is between 20 and 25 years,” he said.