ABEL WAS BORN with one eye larger than the other.

The difference wasn’t striking, but it caught the attention of the doctor who delivered him, and Abel’s father Getahun sought advice on what might have caused it.

“There’s nothing wrong with the baby,” doctors told him.

Many parents would have given up at this point, but Getahun persisted. He tracked down experts on eye diseases, and asked their opinions.

Eventually, at 3 months old, Abel was diagnosed with retinoblastoma, a cancer of the eyes that occurs almost exclusively in children.

The lucky ones

In Britain, 40 or 50 children are diagnosed with retinoblastoma each year, of whom one may die [1]. In Ethiopia, it’s the other way around: Perhaps a hundred children are born with it, and only one or two may survive. [2]

Abel is one of the lucky ones. The doctor who diagnosed him connected the family to colleagues in Nairobi, Kenya, where the affected eye was removed before the cancer had a chance to spread.

My family has straddled this epidemiological divide. When my son was diagnosed with retinoblastoma in 2012, we were living in Ethiopia. The diagnosis sent us hurrying back to the UK. Now 3 years old, Isaac has received many rounds of treatment; the journey hasn’t been easy for us. But he’s retained some useful vision, and he’s flourishing in spite of the disease.

Each time I go back to Ethiopia I think about how much greater the challenges would have been if that door to the UK hadn’t been open for us.

A new path

This Spring, I brought together a diverse group of people to talk about eye cancer in Ethiopia’s capital, Addis Ababa. The participants included doctors, representatives from the Ministry of Health, and members of charities working on cancer in Ethiopia and Kenya. Families affected by retinoblastoma took part as well. The stories they shared — and the presence of their children, who variously sat with us and played around the sides of the meeting — helped bring home the reality of the subject matter. One of those children was Abel.

Participants, from left to right: Getahun Tsegaye (with Abel), Girma Mekonnen, Ermias Kibreab (with Bisrat), Yemesrach Tadesse, Faith Barasa, Jed Stevenson, Molla Ayele, Brian Ouma, Wondu Bekele, Dr Abu Beyene, Dr Jakob Schneider, and Sister Atsede

The goal was to identify a way forward:

• What are the most important priorities?
• If £10k or £100k were available to improve retinoblastoma care in Ethiopia, where should it be invested?

The consensus of the meeting was that Ethiopia needs an organization devoted to eye cancer. An organization with active participation from parents in defining its mission and overseeing its work. Getahun is on board, and so are several other families. Veteran campaigners are providing advice, and the Ministry of Health has given its blessings. [3]

Ethiopia’s not out of the woods yet as far as this disease is concerned, but hopefully this may be the right path.

Jed is taking part in a ‘bush trek’ in Africa in September 2014, to raise funds for eye cancer in Ethiopia. For more information, or to donate, visit Life and Sight for Ethiopia.

Jed with Getahun and Ermias, and their sons Abel and Bisrat

https://africanbushtrek2014.everydayhero.com/uk/life-and-sight-for-ethiopia

Notes

[1] Cancer mortality statistics from Cancer Research UK.

[2] In Kenya, survival is estimated at 27% (Dimaras et al. 2012, The Lancet.) In Ethiopia, Dr Emebet Girma reports that only 10% of the children she sees at Hawassa University Hospital (the major referral centre for the south of the country) arrive early enough to have much chance of cure.

[3] The minutes of the Addis Ababa meeting are available here. I reported on a prior meeting in 2013 here.