Cerebral palsy…Kelvin’s journey

Sunday 3 December 2017

By Benson Ewoi and Philip Ekuwom

Kelvin while at home

Kelvin Ekai is 7 years old and lives in Maendeleo village Turkana County. Kelvin was born at home and diagnosed with cerebral palsy when he was four months old. 

According to Jared Inglinga Occupational therapist from Lodwar County and Referral Hospital Kelvin was born with severe cerebral palsy as a result of prolonged labour by the mother.

Rhoda, Kelvin’s mother says:  “My child became very sick at four months. His body movements were not normal and I took him to the dispensary. His father ran away when he discovered that Kelvin was very sick. The neighbours ran away from me and nobody wanted to be associated with me because they thought I was cursed. But my family members were there with me.”

In February 2016, Kelvin was among 25 Children With Disabilities (CWDs)  identified and enrolled into a Rehabilitation program supported by Save the Children with funding from Christian Blind Mission (CBM)

Story in the beneficiaries’ own words:

“I believed I was cursed when I discovered my son was sick. He could not even move his body. He only stared at people and cried nothing else. His age mates were running, playing and even going to school but Kelvin needed my attention all the time. My husband ran away because of Kelvin’s condition, we did not quarrel and we did not have any differences. He disappeared just like that and he later told me he cannot afford the shame I have brought to the family,” says Rhoda

Concepta Longole Coordinator rehabilitation service from Turkana County Ministry of Health says: “We conducted an identification, assessment and measurement exercise for CWDs in Turkana Central and Turkana East sub-counties. Kelvin Ekai was identified during this exercise and referred to Lodwar County and Referral Hospital. He was enrolled with other 24 CWDs for rehabilitation services with an aim of preventing more deformities. The children undergo physical therapeutic exercises including seating and standing exercises and stretching of muscles.”

 

Kelvin’s mother conducting the therapy at home

“Unfortunately, Kelvin did not respond to rehabilitation services after 4 months and therefore, as a long term solution Kelvin’s mother was trained on basic rehabilitation skills so that she could do the exercises at home. Kelvin was put under home based care and supported by community based rehabilitation outreaches,” says Makori Stanley an occupational therapist at Lodwar County and Referral Hospital 

At the time of rehabilitation, Kelvin’s mother was accommodated by her sister in Lodwar town to enable Kelvin attend the sessions regularly. 

When Save the Children visited Kelvin in February 2017, Kelvin’s condition had improved. Kelvin can now play with other children and allow the mother to do some work.

Rhoda says:  “I am happy now when I see him playing with other children, seating alone, eating alone something that I never believed would happen. Every morning and evening I do physical exercises for him because I want him to start going to school. I am grateful to Save the children for their support.” 

Project information:

According to the 2009 Kenya Census, Turkana County has an estimated population of 1,011,235, out of which 0.6% are children living with disabilities. Most people in Turkana hold beliefs that disability is caused by evil spirits or curse from the gods. Children and adults with disability are stigmatised thus miss out on opportunities such as education and health.

Save the children with funding from CBM is supporting the County teams in Turkana to conduct community based rehabilitation outreaches under the disability mainstreaming project. The main objective of the project is to increase access of CWDs to interventions by government and non- governmental organizations that address their exclusion from education, health, and social services. 

This project helps to facilitate physical rehabilitation and specialized treatment for children with disabilities. So far 500 children with delayed milestones, cerebral palsy, congenital malformation, down syndrome and neurological deficit and general body weaknesses have been supported to access rehabilitation services.. The project has also supported 2,660 children with other forms of disabilities.