Family’s pain as rare disease strikes

Tuesday June 11 2013

Three of the four children who suffer from the rare ailment outside their home in Ciamburi, Mbeere South.PHOTO/CHARLES WANYORO

Three of the four children who suffer from the rare ailment outside their home in Ciamburi, Mbeere South.PHOTO/CHARLES WANYORO NATION

By CHARLES WANYORO [email protected]

Four children from one family have been diagnosed with a rare disease that has baffled even doctors.

The children aged between two and 13 years from Ciamburi village in Mbeere South district suffer from a disease scientifically called Xeroderma pigmentsum, a genetic condition that has left them with multiple skin tumours that have turned into deep-elongated wounds.

Mbeere South district public health officer Gabriel Maina said they can only give them medicine to relieve the pain and dress their wounds.

He said they had already held barazas in the area to ward off the notion that the condition was a result of witchcraft.

“As a ministry, there is nothing we can do. We can only offer palliative care to relieve their pain,” he told reporters in his office.

Area health promotion officer Pauline Nginyo said the condition is rare in Sub-Saharan Africa but is prevalent in Asia and North Africa and affects one child in a million births in America.

“It is caused by the parents’ genes. The skin starts to crack and causes blistering,” she said.

Ms Nginyo appealed to well-wishers to assist the family take the children for further tests and buy food to help meet the children’s demanding diet.

According to their mother Marion Muthoni, her children Lucy Wanja, Simon Kariuki Kennedy Murimi and Victor Macharia have been seeking treatment for long but their condition only gets worse.

Skipped school

The couple has three other children who have not been affected by the disease.

The four children, who have never attended school due to their condition, are constantly in pain and keep on scratching their face. Lucy and Kennedy have continuous running noses and wounds that ooze puss. The girl cannot even see well.

They have trouble wading off flies and have to stay in a dark room and medics say the condition facing the two has reached cancer stage.

For about 13 years, Ms Muthoni and her husband Daniel Kinyua, have been seeking treatment for the children but were only informed of the condition last year after skin tissue samples were taken to South Africa for analysis.

“We have sold all the livestock to finance the treatment. We need help,” she said.

Marion can be reached on 0718430660.