A couple at an IDP transit camp in Eldoret is agonising over their three-year-old child who suffers from a rare ailment.

Nesta Ndung’u Mbuthia’s parents are baffled by his condition, which has left his tongue swollen to almost five times its normal size.

Every morning, Ndung’u wakes up to bloody beddings due to wounds on his tongue that ooze throughout the night. His father, John Mbuthia, 26, and mother Esther Nyambura, 24, were displaced by the post-election violence and now live at Yamumbi transitional IDP camp.

"When he was born, we noticed his tongue was attached to the upper side of the mouth and he would breast feed on the lower side of the tongue," says his mother.

Overwhelmed by the joy of having a bouncing baby, the couple did not know the condition would degenerate into the current problem.

"We thought the tongue would resume to its normal state but when a growth started below two weeks after birth, we were alarmed," said Mr Mbuthia.

Nesta Ndung’u with parents John Ndung’u and Esther Nyambura. Photo: Vincent Bartoo/Standard

The growth blocks the infant’s respiratory system, causing convulsions. The parents took him to Moi Teaching and Referral Hospital in Eldoret where the boy was admitted to the Intensive Care Unit.

"We were told he was suffering from ‘cystic hygroma’, a condition that affects the head and neck," said Mbuthia. Doctors performed an operation, which consisted of an opening on his neck.

"We could not afford reconstructive surgery and doctors told us all they could do was create the opening he could use a tube to breathe," said Mbuthia. Ndung’u was only two years old when post-election violence broke. The violence hampered their movement from the showground to hospital.

"Hospitals were then overwhelmed by victims of the violence and we did not have any chance of seeing a doctor," said Mbuthia. His condition deteriorated, with an inflammation on the upper side of his neck that even curtailed his speech.

"You could see that he was in pain but he could not say it or even cry. All he could do to express it was by shedding tears," said his mother.

Today, Ndung’u has been admitted 11 times to hospital in critical condition and his parents believe he remains alive through God’s grace.

When the violence ended, the couple resumed their numerous trips to the hospital but their son’s condition made it difficult for doctors to assist.

"They told us he required specialised treatment which was beyond their capacity. They referred us to Kenyatta National Hospital," said Mbuthia. But the father of three said he could not afford the cost.

"Worse still, we have not found a permanent place to call home. We are still stuck at this camp. We used to rent a house in Yamumbi Estate but the landlord would not have us back," said Mbuthia.

Before the violence displaced them, Mbuthia used to buy bones from butcheries in Eldoret town, which he would boil to make soup for sale at the estate. Baby Ndung’u’s mother is a housewife.