Thandeka Moyo-Ndlovu, Senior Health Reporter
SINCE Lettwin was diagnosed with xeroderma pigmentosum (XP) – a hereditary condition characterised by extreme sun sensitivity, leading to a very high risk of skin cancer – in Grade One, 10 surgeries have been performed on her face and she has been in and out of hospital for the past nine years.
During one of the surgeries, the 15-year-old lost her left eye after radiotherapy was used to treat a tumour.
Most people with XP develop multiple skin cancers during their lifetime and these tumours occur most often on the face, lips, and eyelids.
Cancer can also develop on the scalp, in the eyes, and on the tip of the tongue.
The condition also leads to ageing, meaning patients often look way older than their peers.
For Lettwin, the condition has seen her have 10 surgeries ever since her diagnosis in 2013 to contain the traumatic tumour growths on her face.
At one time her lips were reconstructed after she developed a tumour on the lower lip.
This surgery forced her to stay in hospital for three months and for four weeks she was on liquid diet as her mouth was closed surgically to help her recover.
Besides the emotional, physical and financial strain that XP has left on Lettwin and her mother, she was also denied a childhood memory of playing outdoors and indulging in sweet treats as these could have easily worsened her condition.
The girl from Pumula East suburb in Bulawayo who is in Form Three, is one of 20 percent of children who survive childhood cancers in low-income countries, including Zimbabwe.
Unlike self-conscious teenagers who can kill to have a smooth face, Lettwin brags of her many surgical facial scars as they remind her of the precious gift of life she has had past her prognosis.
Doctors indicated to her mother, Ms Nobesuthu Ngwenya, that children like her could either get an immediate bone marrow transplant outside Zimbabwe or waste away as there is nothing much she can get out of the public health care system.
Chronicle caught up with Ms Ngwenya who said International Childhood Cancer Day, which is commemorated on February 15 every year, should be used to raise awareness in communities about the disease which killed more than 67 children last year.
Zimbabwe joined the rest of the world in commemorating the day yesterday with the World Health Organisation saying premature deaths from childhood cancers can be reduced by strengthening early and accurate diagnosis.
“We first discovered that Lettwin, my only child, had xeroderma in 2013 after consulting a optical specialist at UBH (United Bulawayo Hospitals).
Our lives changed from that day and we have been in and out of hospital to treat this or that growth on her face,” she said, taking a break to wipe tears streaming down her cheeks, triggered by the painful memory.
“The diagnosis was a bombshell on my part as it coincided with a financial crisis since I am not employed.
On her part, the diagnosis affected her studies badly.
She was always the least performing pupil as she could not cope with the constant visits to the hospital, admissions, blood tests, changes in diet and the fact that she could never be outdoors.”
Ms Ngwenya said raising a child with cancer as a single mother was traumatic as she lived with the fear that her child could just die since the family is yet to raise funds to have her do the bone marrow and the cornea transplant.
There are options to do the transplant in India and South Africa, but tests are still being conducted locally before that can be done.
In the event that she has to go outside the country, the family would need financial assistance.
“Doctors said she needs a bone marrow transplant so that her immune system can fight these infections and tumours. She also needs a cornea transplant as one of her eyes has been affected.
Unfortunately, we did radiotherapy at Mpilo when she was in Grade Four to treat a growth in her eye, but it got worse and has never worked,” she said.
According to Ms Ngwenya, Lettwin’s survival can only be attributed to earthly angels in the form of family, friends and church mates who have kept her hopes high during the most trying times of her life.
Her daughter’s condition means the family has to part with close to US$30 for sunscreen cream in a month which must have a sun protection factor (SPF) higher than 50.
Ms Ngwenya, however, added that Lettwin’s condition has helped both of them to be grateful and optimistic.
She said her child’s father is in Harare, but has been absent in his daughter’s life.
“I have had to buy expensive fruits as an alternative to sweet things from the day she was diagnosed and we try to maintain a healthy diet so that it improves her chances of survival.
My daughter accepted her condition and by the time she got to Grade Six, she started excelling and as I speak, she is one of the top students at her school in Gwanda where she is staying with my sister during school days,” she said.
“This condition has inspired her to dream big.
At first, she wanted to become a pathologist as we have had to do a lot of blood tests but as she has gained confidence and matured, she is determined that one day she will become a dermatologist since there is none in Bulawayo so far.
I also believe in her dream of finding a cure for XP as there is none and establishing a beauty line to help women who often lose confidence due to skin problems especially on their faces.
I live to be her number one fan as I believe that one day, she will win the battle which she had been fighting courageously so far because God is there for us.”
Ms Ngwenya urged Government to treat cancer like HIV and avail treatment free of charge as many children were dying without help.
Mr Daniel Mckenzie, the director of Kidzcan, an organisation that deals with childhood cancers in Zimbabwe which include leukemia, neuroblastoma, rhabdomyosarcoma and retinoblastoma said many families in Zimbabwe don’t know that children get cancer and so often seek alternative treatment first and in the meantime the cancer would be spreading.
“People who seek cancer treatment, in particular children and their parents, hit barriers at every step ranging from income, education, geographical location, discrimination based on the ethnicity, race, gender age, disability and even lifestyle are just a few of the factors that can negatively affect care,” said Mr McKenzie.
“Most disadvantaged groups are most likely to have increased exposure to a host of other risk factors such as tobacco, unhealthy lives and also the environment.
Childhood cancer patients are faced with further challenges in the hospital which include access to diagnostics, medication cost, if available or if they are working.”
WHO African region technical officer for cancer Dr Sharon Kapambwe said high mortality rates in childhood cancers have been mainly due to delayed diagnosis in Zimbabwe.
“In addition to that, misdiagnosis, difficulties in accessing care and the fact that there is also a high rate of abandonment of treatment due to the financial and sociocultural burden that childhood cancer brings.
We are committed to working with the Ministry of Health Care so that Zimbabwe is one of the focus countries for the WHO Global Initiative for Childhood Cancer (GICC),” she said.
“This initiative by WHO enables the participating countries to access technical and financial support to strengthen the health systems and raise awareness on childhood cancers.
The move is expected to improve the landscape of cancer management for children in Zimbabwe.
WHO looks forward to working with the Zimbabwean government to come up with a sustainable childhood cancer programme that will improve chances of survival for children with cancer in the country and reduce their suffering.”
Article Source: The Chronicle