For parents of children with cerebral palsy, one persistent challenge is the simple act of getting their child’s hair done. Whether it’s a routine shave or a special salon day, these trips often become heart-breaking experiences. Each visit serves as a cruel reminder of their child's differences.
For Petronila Mutheu, finding a barber for her 11-year-old son was a daunting task. “I would take him to a barbershop, but he was always scared that the shaver would harm him, which made him fidget a lot and frustrated the barber,” she recalls. The barbers she encountered often failed to understand her son's condition, choosing instead to work with clients who were easier to manage. Frustrated, Petronila eventually gave up and began shaving his hair at home with a pair of scissors. “Unfortunately, this meant that his hairline was often uneven and unkempt.” One day, she bumped into information on a salon that was dedicated to children with cerebral palsy.
“Discovering BM Salon was a relief for me. Now, I don’t have to worry about him. He enjoys going for his shave, and I can even get him different hairstyles," she tells Nation Lifestyle.
On a typical day, Christine Arunga Mutola, the founder of Barrack Museka (BM) Cerebral Palsy Salon can plait three children with cerebral palsy. “We have to be extremely patient with them. A hairstyle that would take two hours on a typical client might take five hours for a child with cerebral palsy (CP). Sometimes, if they need to rest, we let them sleep and continue once they are ready,” she explains. The salon located in Nairobi’s Donholm area was established in 2019 “in honour of my son, Barrack Museka who passed on in 2017,” says Christine.
One of Christine’s greatest challenges while raising Barrack was finding a barber shop that could accommodate his needs. “Whenever we went to a barber shop, they would refuse to attend to him. He was spastic, and he would shake uncontrollably, which scared the barbers. They would then complain and say harsh things like, ‘This boy has a mental problem, why are you bringing him here?’ It broke my heart.”
Faced with constant rejection, Christine began cutting Barrack’s hair at home. “However, I couldn’t help but wonder; ‘How many other parents were going through the same struggle?’ Determined to fill this gap, I launched the salon dedicated to serving children and adults with cerebral palsy.”
Christine's salon is uniquely designed to cater to the needs of children with CP. The salon uses tools specifically chosen to prevent sensory overload. “Our shavers don’t make noise, so they don’t trigger the children’s involuntary movements,” Christine says adding, “We also avoid using blow-dryers whenever possible, opting for detanglers and coconut oil instead.”
Barrack Museka Cerebral Palsy Salon founder, Christine Arunga during the interview in Nairobi on September 30, 2024.
Photo credit: Lucy Wanjiru | Nation
Every aspect of the salon experience is tailored with care. “Children with CP can have any hairstyle, but we keep it simple and light to prevent discomfort. If they sit for too long, they can become irritable, which can lead to seizures. So we try to work quickly but gently.”
Christine’s salon also serves as a space for advocacy welcoming other clients besides those with CP. “We ensure that the other clients know upfront about the salon’s mission. When you walk in, it is clear this is a place for children with CP. Some people leave when they realise that, but most stay and many are supportive. We are trying to reduce stigma by showing people that these children are just like anyone else and they deserve to look good and feel good too.”
Running the salon has not been without challenges, particularly during the COVID-19 pandemic. “We initially funded the salon by selling branded T-shirts and wristbands, but when COVID hit, that income dried up,” says Christine. After brainstorming alternatives, she and her team decided to fully invest in the salon.
Barrack Museka Cerebral Palsy Salon founder, Christine Arunga during the interview in Nairobi on September 30, 2024.
Photo credit: Lucy Wanjiru | Nation
“We realised that next to food, beauty is something people will always need. I love doing hair, it’s something I’ve enjoyed since I was young. Now the salon has birthed the BM Cerebral Palsy Foundation, a therapy and day-care centre for children with CP.”
Today, Christine has employed three trained staff members and continues to serve both special-needs and typical clients. “We charge standard rates for typical clients, but we keep the prices minimal for children with CP,” she says adding, “Initially, when we started we had very few clients but now with more awareness, I am having many more parents bringing in their sons and daughters who have cerebral palsy. This is more than just a business; it’s a humanitarian project. Proceeds from the salon are put into funding the activities of the foundation.”
Christine’s work in the salon is a labour of love born out of loss. “Barrack’s passing was painful, but I know he would be happy to see his friends well taken care of,” she reflects. “Whatever I would have done for him, I now do for others.”
When Christine Arunga gave birth to her first child, Barrack Museka, she could never have imagined how profoundly his life and his struggles would shape her future. “Barrack was born prematurely at eight months and did not cry at birth. He lacked oxygen, and that affected his brain,” Christine said adding, “Being a first-time mother, I didn’t understand what was happening. I was just excited to have my child.”
Initially, no one informed her about Barrack’s condition. It was not until he missed key developmental milestones, such as sitting at six months, that Christine began seeking answers.
“I went to the hospital, and they told me he had severe rickets,” she says. However, after three months of treatment, little changed. When she returned to the hospital, doctors finally diagnosed Barrack with cerebral palsy. “That’s when I started understanding what CP meant, and it was overwhelming.”
Navigating life as a caregiver was difficult. Barrack needed anticonvulsants, therapy, and round-the-clock care, making it nearly impossible for Christine to hold a full-time job. “Caring for a child with cerebral palsy is expensive. But the hardest part was acceptance, both my own and society’s,” the mother of six says.
To cope, Christine joined a support group for parents and caregivers of children with CP, where she found not only information but also emotional support. “When Barrack passed away in 2017, the support group stood by me,” she says. Though she lost her son, Christine felt compelled to continue supporting other parents. “I knew that if Barrack was still alive, I would be doing everything I could for him. Now, I want to do that for other children.”
Like Christine, Petronilla Mutheu had a difficult time accepting that her son, Ezron, had cerebral palsy especially because she had an easy birth. “Ezron was born in 2013 and there were no complications during his birth. However, two weeks later, I noticed that something was not right. I started taking him to the clinic, but the doctor never mentioned that he could have cerebral palsy. It was not until six months later that I began to realise the situation was more serious. We were initially told he had delayed milestones and that he would catch up in time. A year later, further tests confirmed the truth; his brain was damaged. The doctor revealed Ezron had both rickets and cerebral palsy, but even then, it felt like they were trying to soften the blow. For three months, we focused on treating the rickets, hoping he would become ‘normal,’ but things didn’t improve. Eventually, we started therapy and medication, and from that moment on, life changed completely,” the mother of four told us.
Petronilla Mutheu mother to Ezron 11 years, who has cerebral palsy during the interview at Barrack Museka Cerebral palsy foundation in Nairobi on September 30, 2024.
Photo credit: Lucy Wanjiru | Nation
Just like Josephine, Petronilla had to put her life on hold to raise her son. “Having a child with cerebral palsy is a 24/7 responsibility. Ezron depends on me for everything; feeding, bathing, changing diapers. Every aspect of his care requires time, money, and emotional energy. However, I have come to accept it; this is the life God gave me. Initially, I struggled. I would cry day and night, overwhelmed by the weight of this journey. Therapy sessions were exhausting, and I was filled with uncertainty. Through counselling and meeting other parents with similar experiences, I slowly began to find hope. It was comforting to know I wasn’t alone,” she says.
Financial challenges have been one of the biggest hurdles for Petronilla. “Caring for Ezron requires constant medical attention, specialised food, and therapy, which are costly. Getting a job has been hard. Many employers are unwilling to accommodate parents in my situation. I had to accept that survival depends on taking any work available, even if it’s not ideal, because without a source of income, it’s impossible to meet his needs,” she says adding, “Therapy has made a difference in Ezron’s life, though the progress has been slow. At first, he couldn’t sit, talk, or do anything on his own. Now, through relentless effort, he can mash food with a spoon, even though he cannot chew properly. Every small step feels like a victory.”
Her advice to a parent whose child has cerebral palsy is to be constantly present and to remain hopeful. “Living with a child with cerebral palsy means going the extra mile every day. It requires patience, courage, and the will to never give up, no matter how hard it gets. While Ezron’s future remains uncertain, I hold onto hope that with continued therapy and care, he will keep improving. Looking back, I see how much I’ve grown through this journey. It has tested my faith and resilience in ways I never imagined. There were moments I questioned God but over time, I’ve come to believe there is no mistake in what He gave me. This is my path, and I am determined to walk it with strength and love,” says Petronilla.
Josephine Thuku, the mother to 17-year-old Jonah who has CP, has been a friend of Christine for a while. She admires what Christine is doing to help parents of children with CP as she recalls her struggles with getting Jonah’s hair groomed.
“My biggest hurdle was getting him to sit still and get his hair shaved. He would move around so his father had to hold him while he was getting his hair shaved until he was 10. Right now I am happy that he can sit through a whole session of his hair getting shaved all by himself,” Josephine said.
Josephine Thuku during an interview at her workspace located in Kilimani, Nairobi on September 19, 2024.
Photo credit: Bonface Bogita | Nation
Jonah was just two days old when he developed jaundice. Initially, everything seemed normal, but by three months, Josephine noticed delays in his development. “As a first-time mom, I was advised not to worry, but my instincts told me otherwise. After consulting a paediatrician at six months, Jonah was diagnosed with mild cerebral palsy (CP), stemming from his early brain injury. At first, I was in denial. I associated disabilities with polio and could not comprehend what CP meant. I cried, overwhelmed by the fear that Jonah might never thrive. Acceptance came through divine grace and support from my family.
Back then, society judged and stigmatized us. Many said that we had been bewitched or that we had committed a sin and that we were being punished by being given Jonah,” she says.
At first, Josephine would hire a house help to care for her son but she noted that they all had trouble taking care of him. “After working with two house helps, I finally decided that no one would be able to take care of my son the way I would care for him so I quit my thriving corporate job in procurement to stay home with him.”
Now Josephine is an artist who designs unique bags, primarily through crocheting and incorporating leather elements.
She adds, “Despite the challenges of raising Jonah, such as managing his therapy and ensuring his independence, I have witnessed his growth. He can now walk, climb stairs, and even feed himself. While he requires supervision and can become easily agitated, he is progressing well. He is in a special needs school, where he is happy, lively, and loved. He enjoys being around people, especially girls, though his speech is still developing.”
“As a mother, my fears have evolved. Initially, I worried about Jonah’s future and how society would treat him. Jonah can be very loving and will often hug people but then not everyone will appreciate this about him. I have been teaching him boundaries and respect for personal space in a bid to help him understand social cues. Now I worry about what will happen to him when my husband and I are no longer there. Will he be able to take care of himself? Will he get a good wife and children?”
On the lessons that she has learnt through her experience, Josephine says, “I have learnt to appreciate life. We take so much for granted. Being able to blink your eyelid is a huge blessing. There is someone who cannot do that. Looking back, I see that my faith has been my guiding light. I left my corporate job to care for Jonah full-time, discovering my passion for crocheting along the way. I do not regret that decision; in fact, I wish I had made it sooner. As I navigate this journey, I remain hopeful for Jonah’s future, praying for his independence and happiness. He has the potential to lead a fulfilling life, and I am committed to ensuring he has every opportunity to do so.”
