What you need to know:
- Grace Njuguna’s granddaughter was 16 when she suffered from meningitis, a condition that left her paralysed.
- She was shattered, but out of her helplessness and tragedy came a strong desire to help children with disabilities.
"Shosh wa nywele white amekuja (The grandmother who has white hair is here),” say the children excitedly as they make their way towards her.
Some of them are in wheelchairs, and some walk with great difficulty because of various forms of disability, but all of them have a glint of determination in their eyes. For they know they are moving towards love and acceptance.
“You know, my hair was black one day and then suddenly it was all white. No warning. I never had grey hair,” Grace Mukami Njuguna explains, laughing good-naturedly as we settle into the interview.
I ask her about the heart-warming reception. I’m curious if this was the norm, and she confirms that it is.
“This kind of grand reception gives me joy that I can’t find anywhere in this world,” she explains as she lifts one of the little children into her arms. The child, happy with the attention, buries his head into the crook of her neck.
“Their warm welcome assures me that I am on the right path. Their responsiveness towards me also signals that they are on the path to recovering, whatever form or shape that may take. We count each step forward as a milestone,” she adds.
Grace is the founder of Malaika Initiative for People with Disabilities, a non-profit organisation located at African Inland Church (AIC) Bondeni, Nakuru Town East.
She is a symbol of hope and love that gives intellectually and physically challenged children a smile away from home.
“The children have shown me that there is strength in the weak. Children with cerebral palsy can live active and fulfilling lives by utilising different types of therapies, assistive devices, and more,” she explains.
The 68-year-old retired teacher says the children remind her daily that physical beauty can fade while inner beauty thrives.
The children keep her young and active. And their jokes about her white hair delight her.
“Some people can’t believe my age when I tell them. The children keep me physically active and mentally alert. Were it not for my white hair, I would look much younger,” she jokes.
“I used to think of age as something to be feared as it leads to many lifestyle illnesses. I have since learned to celebrate and appreciate it through these children,” says Grace.
The home caters for the physical and mental needs of 20 children. Some of the children have cerebral palsy, while others have various forms of disabilities. Some are blind, deaf and dumb, bowed legs, while others have spinal cord problems, which has condemned them to wheelchairs.
She continues: “I have witnessed God’s miracles. Four boys who were brought here were unable to walk, but after therapy, they are now walking and are in school and are assured of a brighter future, and one is in a special school.”
The three brothers aged 13, 10 and five had cerebral palsy. They could not sit down, stretch their hands to eat or speak.
“I’m glad they were able finally to sit down, and they can comfortably use a wheelchair, and they are in a special school. That drives me to wake up every morning, and when I see them laugh and crack funny jokes that are out of this world, I’m so happy to be part of this amazing family.”
She says cerebral palsy is a disorder that can impact any aspects of a person, but it does not define who that person is.
“I started this work because of challenge I went through with my granddaughter Ruth, a bright girl who was born normal and an all-round A student who was destined to become a scientist, an actor or musician but at the age of 16 while she was in Form Two at Menengai High School in Nakuru Town she was attacked by meningitis and suffered a stroke and was paralysed. I thank God she didn’t die.”
Grace has two daughters. One of them is Ruth’s mother, who died when Ruth was in Class Seven.
She adds: “After two years, she could sit down with support. She slowly started walking with support, play and feed alone.”
Grace reveals that she suffered a lot because of what she went through and asked God many questions.
“I was rejected by the community and family. I suffered discrimination, stigma, segregation and that marked the beginning of my long agony and stress.”
“I thought of how many children were suffering and had no one to take care of them. Many are not taken outside to bask in the sun. I wanted to start the organisation to bring out such children as most of them are locked in the houses suffering in silence with no food, and that is how Malaika Initiative for people with disabilities was born in 2015.”
Individual well-wishers assist her. She approaches individuals to sponsor the children by paying Sh200 daily for their upkeep. Sometimes she uses her pension to sponsor the home. She has three staff members. Since it is voluntary work, she pays them a stipend at the end of the month.
Many of the children at Malaika come from the neighbouring slums of Bondeni, Lake View, Kivumbini, Flamingo, Kwa Rhonda, Paul Machanga, Manyani and Kaloleni. In contrast, others come from far-flung areas such as Bahati and Dundori areas.
She started with five children who came from Lake View, Manyani and Kivumbini slums. She visited the parents at their homes and convinced them that they could solve the problem instead of locking the children in the house if they come together.
She convinced them that they are likely to get assistance when they are many, rather than when the children are hidden in the house. Some of the parents were willing as they saw the disabled children as a burden. It is a day-care centre and has about 20 children who go back to their parents while the other 30 she visits them in their homes making about 50.
Grace says she decided to call the centre Malaika because she believes the children are angels and God is watching over them.
She has become an advocate for families with children with special needs who fear to come out in the open. She visits social services offices, churches, public barazas to create awareness about the plight of children with special needs.
She has formed a support group called Genesis of the Disabled Children for parents with disabled children who have become ambassadors in the slums and other places they go.
“Having a grandchild with special needs changed everything: because I now know the effect raising a child with special needs has on the entire family and how hard it is to learn about and access the multitude of needed services, I feel compelled to help other families through this day-care anyway I can.”
She never imagined her grandchild would be disabled, but slowly learnt to accept the new reality.
Her efforts to convince Menengai High School to readmit Ruth failed. The school management argued that since she was paralysed on the right side and could not right, they could not accept her.
She accepted the school decision since she could not change and accepted the condition positively. She decided to look for other parents with such children so that they could share their experiences.
“I went through a challenging phase. The wandering from one doctor to another hospital,” recounts Grace.
Most of the doctors told her that there was no hope of recovery for her granddaughter. Some of them told her to her face that she will not survive even if she was taken to the Intensive Care Unit (ICU).
However, one neurosurgeon at Moi Teaching and Referral Hospital in Eldoret gave her hope by telling her that Ruth’s brain can rejuvenate. She has two other grandchildren. Ruth, 29, stays with her grandmother. She is still on the recovery path and is regaining her speech.
“I found that there is a significant population exists of similar children, and I took the challenge of providing services to such children and families under a single roof.”
“I’m continuously inspired by the possibility of making a difference and potentially improving the lives of others with cerebral palsy. I hope for a day when people with cerebral palsy are understood and embraced by not only those who are somehow connected to it, but also by the general public.”
A majority of the children at the centre have cerebral palsy. She says parents of children who wish to take them for therapy at Nakuru Level Five hospital faces many challenges as some of the matatu operators reject them.
“This open rejection makes parents fear to bring out their children in the open because of stigma and cultural beliefs which leads to self-stigmatisation,” says Grace.
Grace helps educate other families about how to handle children living with cerebral palsy.
“Many hide them, and some don’t allow the children to bask in the sun. Many are abandoned by their biological mothers and are taken care of by their grandmothers since it is a 24/7 caring job to raise a disabled child.”
Peter Wanjohi, 30, a co-founder of the centre, says that many youths are not involved in charity work and urges the youth to volunteer to do charitable work in the children’s home.
“I was raised at Upendo Children’s home at Manyani slums, and that is why today I can spend my precious time to give and hope to these children,” says Peter.
They met while she was on an outreach mission in Lake View slums. One day, she brought the children to her church AIC Bondeni in 2013, and Peter happened to be a member of the church.
After she made her appeal for assistance, Peter followed her after the service as the plight of the children touched him, and since then, Peter has developed an interest in philanthropic work and has been assisting her. He is now one of the board members that run the children’s home.