Brain At the Forehead, No Nose: A Child In Despair

Grace Ukwishatse

Born on the ninth month like any child, you may only wonder how comes Grace Ukwishatse 7, came to the world with some organs misplaced and others, still absent.

However, this is not the question anymore for the guardian; their main concern is now; how to have the malformation treated to end the child’s despair.

It was in 2013 when Ukwishatse was born to Daniel Ndayambaje and Alphonsine Tuyisenge in Nyamirambo, a village in Rurenge cell, Rukomo sector of Nyagatare district which is located in the Eastern Province of Rwanda.

Ukwishatse in English is loosely translated as “God’s Will”.

It was a name the parents gave her after realising that she was born with that anomaly where the brain was at the forefront and she did not have the external part of the nose.

The name Ukwishatse suggests that there was no choice if not to leave her the way she was because it was in God’s will.

However, the parents felt that they would not “bear the burden of raising a child not like others” and they disappeared.

“We learned that the father fled to Uganda and we have no whereabouts of the mother either. They all disappeared after realising the anomaly on their firstborn,” Alex Segikwiye, Ukwishatse’s grandfather who took the child told Kigali Today, our sister website.

Segikwiye ari kumwe n
Ukwishatse and grandfather

Initially, he said, the eyes were also mislocated and were confused with the ears, but the Kigali based University Teaching Hospital(CHUK) managed to correct it.

“We were told that they would transfer her to India where specialists would succeed to get her a nose and to relocate her brain successfully, but it has been a long wait now,” said the grandfather.

According to this parent in his 60s who also has a hand disability and poor, the promise to take the child for the medication in India was made in 2017 and renewed last year, but, he says, it seems they have forgotten about my daughter.

Before COVID-19 interruption, Ukwishatse was studying in Primary 1 at Rurenge Primary School and doing well.

“But I am very much concerned to see how much her brain is exposed,” said the grandfather.

Juliet Murekatete, the vice mayor in charge of social affairs in Nyagatare district said that they are working with a team experts to categorise the disability of Ukwishatse so that they can see how to give her some support.




Leave a Comment