The Sunday Mail
Tanyaradzwa Rusike
It has been said beauty is only skin deep, an idiom meaning that beauty is more than just good looks and a pretty face.
It encapsulates one’s character, including having a warm heart and a caring soul.
Former top model, Ms Pauline Mapuvire (40), a woman of stunning looks, is a living testament of the true meaning of this ancient wisdom.
She is a woman with a heart of gold and “mother” of 84 children, three of whom are her biological offspring.
The former Miss Zimbabwe contestant is changing lives of children suffering from Xeroderma Pigmentosum (XP), a rare medical condition characterised by extreme sun sensitivity, that leads to high risk of developing skin cancer.
In 2017, she met a woman whose child was suffering from XP and was in desperate need of help.
Initially, she thought the child had suffered burns to her body.
She then took her to see doctors who diagnosed the rare condition.
This marked commencement of her work with children affected by XP, a journey that would witness her provide care for dozens of other children with the condition.
“This was caused by faulty genes found in both parents, resulting in the offspring being allergic to the sun,” she told this publication recently.
“When they get exposed to the sun, their DNA is damaged and it cannot be repaired.”
Having witnessed first-hand this child’s torment and suffering, she made a decision to devote her life to assisting children in similar predicaments.
Most of these children, she said, are not well taken care of and live in neglected communities.
Further compounding the children’s already dire situation is the belief by most communities that this condition is caused by witchcraft.
“I started helping the first child using my own resources, but with time, people started referring other mothers to me,” she recalled.
“I ended up having nine children to look after.
“I saw this as an opportunity to continue expand my charity work, having previously worked with street kids.”
The number of children living with XP requiring assistance continued to grow.
That is when she thought of founding the Xeroderma Pigmentosum Family Support Zimbabwe in 2019.
To date, the organisation has helped 82 children who were diagnosed with XP.
“The reason behind the formation of this family support organisation was for me to find the best way to assist these children because they have a right to life,” said Ms Mapuvire.
“Currently, we are in the process of scouting for donors and sponsors so that we can open a home for these children.
“I believe it will be easier to care for them if they stay together.
“They have special needs which are costly.”
She said the children require special lotions, creams and ointments, which are pricey.
Plastic for the children’s visor hats are imported from Germany.
“So the cost per child is about US$400 per month,” she added.
She said her family has supported her throughout her journey, making her work more fulfilling.
“My husband is very supportive and he has been supporting me since I started this.
“My three daughters are also following in my footsteps because whenever I travel with them to see the children, they help their families with house chores.”
Zimbabwe Medical Awards Trust chairperson Dr Josphat Chiripanyanga said XP is generally detected when the child is around six months old.
“XP is an autosomal recessive genetic disorder that results in poor or inability to repair DNA,” said Dr Chiripanyanga.
“That means whenever there is DNA damage on any part of the body, the repair is poor and one has difficulties in repairing the DNA.
“Usually you can see this when a child is about six months old after they are exposed to the sun for the first time.”
He said the child will develop a skin rash that is difficult to treat.
Dr Chiripanyanga said the child’s life expectancy is usually cut short because they are prone to developing cancers.
“The sun burns are excessive compared to what you expect in a normal individual,” he added.
“Later on you will notice that the child’s eyes are affected and they develop cataracts and red eyes, which may eventually lead to blindness. They are prone to skin cancer because their skin is so fragile and it cannot repair the damaged DNA.”
He said XP has no known cure.
Mr Cuthbert Nyaruvenda, president of the Zimbabwe National Practitioners Association, a non-profit voluntary organisation
that promotes the registration of mid-wives, herbalists, traditional and faith healers, urged traditional healers to refer patients with XP to hospitals.
“Xeroderma Pigmentosum is a cancer that is already there and what we do as traditional healers is to encourage expecting mothers to take herbs before birth to prevent this,” he said.
“However, when the child is born with this condition we can only give some herbs but encourage them to seek medical assistance.”
