Before registering Cerebral Palsy Society of Kenya (CPK) in 1996, a group of parents with children living with cerebral palsy had been meeting regularly in downtown Nairobi. Five years later, they started a clinic to provide occupational, physical and speech therapy to children with cerebral palsy. It is because of this initiative, a first of its kind in Kenya that Mary Mwikali’s daughter Naomi Njoki, can access the requisite care she needs. Mary, 40, a mother of three was abandoned by her husband when she gave birth to Naomi who lives with cerebral palsy. Mary spoke of the challenges she faces in raising a child with cerebral palsy. “As Naomi grows older and heavier, it becomes difficult to carry her around,” she said.
“The public is also not fully aware of the condition and we are sometimes subjected to uncomfortable stares and questions,” she adds. Naomi requires her mother’s full attention and not being able to afford a caregiver at home means that she has to be there with her all day, every night. This took a toll on her and as she could not give the attention her other two children needed she had to let them go live with her brother back in her rural home so she could devote more care on Naomi. “I used to take her for therapy sessions at Mama Lucy hospital in Nairobi and it is from there that I was referred to CPSK.” She says. Mary would wash clothes around her neighborhood of Soweto, a slum in Nairobi, to sustain their livelihood. After taking Naomi for therapy at CPSK, she decided to ask for a job there and was granted one of a cleaner. She has been working there since 2014 and with that she gets to earn a living while providing Naomi with the care that she needs. Naomi accesses therapy sessions at the clinic for free.
The therapy sessions have improved Naomi’s condition as Mary attests. “Since starting therapy and having access to proper medication, she no longer experiences convulsions which used to disturb me a lot. Her neck balance is also improving,” she says. Cerebral Palsy is a disorder of movement, muscle tone or posture that is caused by damage that occurs to the immature, developing brain, most often before birth. It is not easy to manage and often takes a toll on parents, guardians and caregivers. It is organizations such as CPSK that give them hope of a better tomorrow for their children. Cerebral palsy requires a multifaceted approach and needs various professionals including therapists, Ears Nose and Throat specialists, general physicians, counsellors and nutritionists. Since at the moment CPSK cannot afford to have all these specialists in house, they organize trainings for their staff and parents and call in the specialists, though they would wish to have at least each specialist working for them in the near future.
Part of their mandate is to raise awareness on Cerebral Palsy. They have had their successes with children who have gone up to university. They rehabilitate children with cerebral palsy and offer guidance and counselling to their families. They also have programmes on economic empowerment for guardians and care givers. The children require full time attention and this presents a gap in the area of livelihoods for some parents. This prompted them to start a self-help initiative where parents are taught a skill and advanced an amount of money to start a business. It is for parents such as Mary and children such as Naomi that CPSK devotes its time to fundraise locally so as to provide proper services to children with cerebral palsy. CPSK raises funds through a charity walk every year among other ventures.
Recent walk in June, 2018 earned them Kes 3.9Million which will go a long way in helping them run their projects as well as purchase a van for their children. Parents pay a subsidized amount of Kes. 800 per month which is not sufficient to carry out all activities at the centre, including paying staff members, thus local fundraising efforts come in handy. “The teamwork amongst our staff members has ensured sustainability in the organisation. They have raised money together with parents and the board and this place wouldn’t run without them,” said George Kakala, the Executive Director. This Local Fundraising and Mobilising Support alumnus organisation is not stopping any time soon. They deem their work a calling and every day is a reminder of why they do what they do.