By Agnetta Okwemba and Alloys Musyoka
As the world celebrated international cerebral palsy day for Sofia Bashir, a caregiver in Diani recounts how the journey to take care of children with cerebral palsy was not a walk in the park.
With lack of facilities, lack of money to buy required medicines and food, she says cerebral palsy cases need special attention that the government should focus on.
Previously there has been a call for the government to fully support Cerebral palsy units by ensuring all required equipment and medicines for children are free provided.
In what started four years ago as a friend group to offer emotional support for cerebral palsy mothers, Sofia says it has now grown into a support system for a special school in Kombani with around 200 kids.
Sofia a mother to a Cerebral palsy kid joined the group that has at least 10 members and were able to elevate it by just Kshs. 200 contributions amongst themselves
“We offer therapy services and also have a feeding programme in our special school,” said Sofia.
Speaking to Coast Times Digital she noted that they need support from all angles when taking care of CP cases while welcoming other caregivers to support them.
This is a similar story to that of Christine Lawrence who got pregnant while in class 8 and is now a CP mother to a 3 years old baby.
Upon seeing her child’s situation, Christine made the bold move to defer school to cater for the baby’s needs who at that time had started receiving backlash from the community for “giving birth to a sick baby”.
“I am often asked how this child will be of help to me,” she lamented.
CEREBRAL PALSY STIGMA
Despite sensitization across the county, stigma among the community is still high as parents giving birth to cerebral palsy children are referred to as outcasts.
Being a member of She Leads group under the Network for Adolescent and Youth of Africa in Kwale Christine paints a picture of a community that is yet to embrace cerebral palsy children.
She narrates different encounters while in their field of work where they visited villages to check on abandoned CP kids with many still neglecting them and others looking for ways to get rid of them.
Christine says that they managed to find an 18-year-old boy whose parents did not believe in taking him to school as a person with disability and took the initiative to enroll him in Mwangulu special school.
“The boy recently participated in athletics in Kakamega emerging a winner,” boasted Christine.
Enlightening parents on the importance of schools where therapy is administered, Christine is now a happy mom as she has seen improvement in her child’s life and is planning to go back to school.
COUNTY GOVERNMENT READY TO SUPPORT
Kwale county government said that there is importance of parents registering their children who are afflicted with cerebral palsy.
County executive committee member for Social Services and talent management Francisca Kilonzo underscored the County Government’s commitment to working closely with other stakeholders to ensure that children born with this disorder receive special benefits designed to improve their quality of life.
She highlighted that the County Government of Kwale is collaborating diligently to provide unique solutions for these children, aiming to make their lives comfortable and fulfilling.
Kilonzo called on the National Council for people living with disability to register residents with disability throughout to ensure they are factored in budget making.
“You should not wait until we are celebrating this day to start registering, it should be an ongoing process throughout. If you have challenges with mobility, the county is ready to help,” she said.
During the international cerebral palsy day, parents were also encouraged to be part of registered groups where they can receive funding from the government that allocates a certain amount in the budget to cater for those with disabilities.
Speaking during the event, Kwale Women Representative Fatuma Masito shed light on the National Government Affirmative Action Fund (NGAAF) that is disbursed in registered groups to benefit the disabled, women and Youth.
Those with disability were assured of support from the National Council for People with Disabilities as they have initiated a programme for the home-to-home issuance of pads, diapers and therapy services.
KIDS CARE KENYA ORGANIZATION SUPPORT
Kids Care Kenya a leading non-governmental organization operating in LungaLunga is in the process of setting up a sensory integration unit in their school as well as in the grassroots levels that will help in levelling up the progress of the uniquely abled persons.
The organization has already constructed several primary schools in LungaLunga with an aim of ensuring cerebral palsy children are taken care of and get education like the rest.
With their theme as “Every Child Matters” Kids Care is one of the schools identified, strategically located few meters from the Lunga Lunga-Msambweni road, it helps in the moulding of CP kids around that area through caregivers and a therapist who also does free therapy sessions in the other schools.
Baya said that in partnership with the government they have established 6 schools that are close to dispensaries in wards where assistance is easily accessible.
Those attending school are 180 with every school having at least 30 kids while those receiving therapy are about 200 of them.
The main challenge being fear of stigmatization, most parents have not yet come out to expose their disabled children to receiving social support from the government and other stakeholders.
CEREBRAL PALSY A RESEARCH
Kids care Kenya in collaboration with other stakeholders said that they will be doing research to determine the cause of disability and whether there are early modes of prevention following the data being at 18,000 and those with cerebral palsy at 3,140.
Cerebral Palsy (CP) is a disorder caused by brain damage that may occur before, during or after childbirth having an effect on a child’s movement or posture.
“Parents should embrace their kids and be open to take them for therapy which is for their own good,” said Juliet Ruwa, Director National Council for People Living with Disabilities.
Lazarus Makupe, Registrar officer LungaLunga emphasized on the importance of registration for both hospital and home delivery as well as the collection of birth certificates.
