In July 2020, Valerie Mukanyandwi started seeing the eyes of her two-year-old son changing shape and direction. It started with the eyes of the little boy becoming red and itchy all of a sudden.

In a few days, the pupil in one eye started enlarging and turning red, losing its original normal black colour. His eyes started becoming squinted.

It was all puzzling for Mukanyandwi, who consulted a neighbour who knew a thing or two about traditional herbs that cure different conditions and ailments.

"It was during Covid-19 and I thought maybe I should try herbs before going to see a doctor, but the more I delayed, the more the eyes reddened and were seemingly painful and irritated,”

"He would often be scratching them and crying. Something was really wrong and, in a month, or two, he seemed to struggle with his vision. I decided to go to Mayange Health Centre to check with a doctor,” says Mukanyandwi, a resident of Bugesera District.

At the health centre, she was referred to Nyamata Hospital and later to Kigali to seek advanced care. Mukanyandwi would later be referred to Rwanda Charity Eye Hospital where the child would be treated before the condition could escalate.

Upon diagnosis, Mukanyandwi’s son was found to have retinoblastoma, one of the most common and devastating eye cancers that mostly affects children worldwide.

It took rigorous efforts by doctors to treat and restore the young boy’s vision in a journey that lasted over four months to confirm that he was completely healed.

According to the World Health Organisation (WHO), retinoblastoma continues to claim the lives of many children, especially in developing countries, yet it has been found that early diagnosis and treatment are critical to prevent death and loss of vision for many.

Research by Lancet Global Health in 2022 showed that children in low-income countries are 16 times more likely to die from the eye cancer, retinoblastoma, at any time within three years of diagnosis than those in high-income countries.

Retinoblastoma is one of the most common cancers detected in Rwanda, according to health experts but the good thing is that it is treatable when detected early.

In a recent interview with Dr Piet Noë, an ophthalmologist and Medical Director of Rwanda Charity Eye Hospital, retinoblastoma is one of the common cancers they treat at the Bishenyi-Kamonyi-based hospital.

Noë says this cancer, which normally attacks tissues of the retina, especially in children, is treatable using surgery or laser therapy but the success of the treatment goes down to early detection and treatment.

While there are no figures to show how serious a challenge the cancer is, Noë says it is a major problem especially in children in rural parts of the country. They receive about 40 to 60 cases on average every year.

"There is one type of eye cancer, which is common in Rwanda and it's called, retinoblastoma. It is a cancer in babies and young children of up to seven years. It starts with white spots in the eye or with squints. The eyes are not straight,” he says.

"If untreated, unfortunately, the child will die. But if treated with chemotherapy and different operations, very often we can save the eye and we can save the life of the child,” Noë states.

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The ophthalmologist says it is very important to see a doctor early enough because if you detect the cancer and it is treated early, they can easily save the eye but some parents delay to see a doctor even when they see a white spot and with no action the results can be fatal.

He pointed out that for most children, they are able to save the sight and their lives working with Butaro Hospital and Rwanda Cancer Centre (RCC).

He says today there are good pathologists in Rwanda who can analyse the cancer and recommend the treatment procedures.

It is one of those eye conditions people like Mukanyandwi start treating with herbs, which compounds what is already a life-threatening condition as it can quickly become fatal if untreated.

Donatha Mujawamariya, an ophthalmology nurse at Rwanda Charity Eye Hospital, calls on parents or guardians to pay regular attention to their children’s eyes to detect the condition early.

She says because retinoblastoma mostly affects infants and small children, symptoms aren't common and people might simply ignore them even when they see them.

"If you see a white colour in the centre circle of the eye or the pupil when light is shone in the eye, or when eyes appear to be looking in different directions or the child has poor vision, rush to see a doctor,” Mujawamariya notes.

If one has a family history of retinoblastoma, it is important to monitor your child from early on.

Retinoblastoma occurs when nerve cells in the retina develop genetic mutations. These mutations cause the cells to continue growing and multiplying when healthy cells would die. This accumulating mass of cells forms a tumour.

Retinoblastoma cells can invade further into the eye and nearby structures. Retinoblastoma can also spread (metastasize) to other areas of the body, including the brain and spine.

For most instances of retinoblastoma, it is not clear what causes the genetic mutation that leads to cancer. However, it's possible for children to inherit a genetic mutation from their parents.

Children treated for retinoblastoma have a risk of cancer returning in and around the treated eye. Follow-up exams to check for recurrent retinoblastoma are very important.

Main treatments for retinoblastoma include the removal of an eye, or enucleation, and intravenous chemotherapy, which is available in Butaro and Rwanda Charity Eye Hospital, among others.

According to a study done in 2022, the majority of children with retinoblastoma in Rwanda and other developing countries present clinically with leukocoria, and their parents or guardians seek medical intervention at a later stage.

There was a noticeably significant lag period for the patients to begin treatment after the diagnosis was done.

One of the biggest challenges identified was the travel distance from home to a treatment centre, especially in rural areas, which may impact the stage at diagnosis and treatment procedures.

Globally, about 1 in 15,000 children develop retinoblastoma, and it is estimated that between 8,600 and 9,000 children worldwide are found to have retinoblastoma annually.

At least 60 percent of the fatalities are found in low-income, 33 percent in lower-middle-income, and 21 percent in upper-middle-income countries.