Online Reporter
Eugenie Muchetu
Correspondent
AS the world moves toward inclusivity for children with special needs, a support group for those with xeroderma pigmentosum, a rare genetic disorder that makes the skin extremely sensitive to sunlight, is calling for the establishment of a dedicated home and school to protect them from the sun, stigma and ostracisation that continue to define their lives.
Children with XP face immense challenges, including failure by many parents to afford sunscreen lotions, protective hats or clothing, as well as being stigmatised in public places.
Although many attend school, some face discrimination from authorities or their peers, while for families, the costs of continual treatment are difficult to meet, leaving the children vulnerable and isolated.
Ms Pauline Mapuvire, founder of the Xeroderma Pigmentosum Family Support group, established in 2017 and registered in 2019 as a private voluntary organisation, has been at the forefront of the fight to assist children with XP.
The group, which has registered 155 known XP members, the majority of whom come from poor backgrounds, aims to provide medical and psychosocial support to persons with XP as well as provide training to affected families and create public awareness about the condition.
Public hospitals assist, but families should still pay for surgeries and medication, which many cannot afford.
Recently some doctors were moving around in rural areas assisting children with XP, which they do occasionally.
Continuous sun exposure leads to cancers, particularly on the face and neck, reducing life expectancy to between 37 and 40 years, with some dying much younger due to lack of treatment.
Though Ms Mapuvire does not have a relative with the condition, her philanthropic spirit led her to act after meeting a mother with a child with XP.
“I saw a need. These children need assistance,” she said.
Recently, Ms Mapuvire travelled to Gokwe after two children with the condition, Simbiso Mapuranga (10) and Danmore Rakodzi (7) (not their real names), were barred from school by a headmaster who believed the condition was contagious.
“The stigma is just too much. The headmaster stopped the children from attending school because he said they were frightening other children and the disease might spread.
“I want to educate him that it’s not contagious. These children must be accommodated so they don’t feel out of place,” she explained, adding that when she got to the school the headmaster was not there.
The psychological effects of the situation could be severe as Simbiso and Danmore were called “zombies” by their classmates.
“Imagine a child being called a zombie at school, how do they feel? They end up isolating themselves and only staying with family,” Ms Mapuvire said.
She suggested homeschooling as a temporary measure, but stressed that will isolate them further.
She added that she had arranged with a few teachers who were willing to go to their homestead and give the children lessons and organise transport for them. “They want to be with other children. But where others are, is it protected? Even light through windows affects them,” she explained.
Ms Mapuvire said she previously engaged the Ministry of Health and Child Care officials on the establishment of the home, explaining that ordinary schools cannot meet the special requirements for children with XP.
“We talked about whether we would be isolating them. It is not a problem to mix them with other children, but their classrooms would need tinted windows and UV‑free lighting. That becomes expensive and unfair for those without the means to stay in the dark. This is why we came up with the idea for a home,” she said.
Ms Mapuvire stressed that the home should have facilities that are specifically fashioned for children with XP.
The proposed home is estimated to cost between US$250 000 to US$300 000 and fundraising efforts, including a marathon, are being planned.
She said stigma is the major challenge that persons with XP face, like in the Gokwe case, where two siblings with the condition were barred from school, as well as cases where some people refuse to sit next to such people in public transport, out of fear that it is contagious.
Some people also believe it is spiritual and go to seek assistance from prophets, where they spend time being prayed for while sitting in the sun.
“By the time they seek medical assistance, the child would already have sores,” Ms Mapuvire said.
She said the condition also strains families mentally, as many husbands often abandon their families, accusing their wives of infidelity or being witches.
“What they don’t know is that XP is caused by a faulty gene that is found in the mother or the father of the child. It could be that both parents are carrying the faulty gene or one parent. It’s not one-sided.
“This disease is inherited. Most people in the country associate the condition with witchcraft,” she explained.
Ms Mapuvire’s lone battle highlights the urgent need for the Government and society to step in, since, without intervention, children with XP face a bleak future marked by stigma, poor health, exclusion and possibly premature death.
Government support, societal understanding, and the establishment of a dedicated home could transform the lives of children with XP as, with proper care, they can grow into productive citizens, contributing to the development of the country. — New Ziana.
