Daniel and Narikai Ngukuu already had 6 children when Narikai was pregnant of Simon. The pregnancy and delivery went well, except that the experienced mother saw that she had more water than usual. The water was milky. When Simon was born they saw a wound on his back and thought they where bewitched. Shocked they went to the nearest local clinic where they knew about the IF project at Bethany Kids in Kijabe. The parents did not understand why this happened to them. There were no disabled children in their families.
After a two hours walk to the nearest bus station they reached the Bethany Kids hospital soon after Simon's birth. In the ward the parents met with many other cases like Simon and got information on the causes and treatment available for Spina Bifida.
Simon's back was closed to avoid infections. After this surgery he developed Hydrocephalus and a shunt was put in his head to avoid brain damage. Simon is paralysed beneath the lesion. He can not walk, and his bladder is also paralysed. At the follow up visits Agnes, the Spina Bifida nurse, taught the father Clean Intermittent Catherization (CIC). This procedure helps Simon to urinate with the help of a device. When done correctly Simon can become dry and infection free like any other child. He should be able to learn to do this himself.
When we met Simon he was sitting under a tree near his house. He has 4 younger siblings. The family now has 11 children, including two twins, and the mother is advised to take folic acid. Simon recently broke a leg and got a plaster at Bethany Kids. He is not able to sit in his wheelchair at the moment. Simon is smart and talkative. Unfortunately he is not going to school. The school is too far away says the father. Indeed, the small roads are not wheelchair accessible. It may be possible for him to sit on the back of a bicycle, when somebody walks beside him and pushes the vehicle. Of course he would need a second wheelchair at school in that case.
|The father also mentions that free education is not a reality in the nearest school. Also a financial problem may be the reason for the parents not to send their children to school. The oldest son, who is 14, was also not at school and taking care of the herd.|
|Community Based Rehabilitation (CBR)
Simon's life is mainly in and around the house. He has friends and plays with his siblings. The neighbours accept him and see he is smart. There are many challenges for Simon and the IF project. Simon is still not dry in-between the catheterisations and he is depending on his father to do it. He needs further counselling and support to go to school.
|Because of the plaster Simon is not using the wheelchair now. For that reason the social worker took it with him for repair. The brakes are not functioning and also the seat and back are completely worn out. When he is coming back for the removal of his plaster, the chair will be fixed and he will be scheduled for a continence week. There he can learn with and from other kids to take care of his catheterisation himself. The social worker will ask the Liliane Foundation to support the family with school fees, a second wheelchair, and a second-hand bicycle for the transport to school. This will enable him to develop his dreams, like becoming an engineer or a medical doctor.|
IF's Catalogue World SBH Day 2012
IF's Position Paper on Ageing