Mothering with chronic health challenges: Why caregivers need support

On a bright Saturday morning at the Jaramogi Oginga Odinga Sports Complex in Kisumu, a small group of women slowly gathers under the shade of trees near the open field.

Some arrive carrying bags filled with diapers, medication, and feeding bottles. Others push wheelchairs or hold the hands of children who struggle to walk. Laughter occasionally breaks the silence, but beneath the smiles are stories of exhaustion, resilience, and quiet courage.

Every Saturday, these mothers meet here for one reason: to support each other as they raise children living with disabilities such as cerebral palsy (CP), sickle cell disease, autism, and Down syndrome. For many of them, this weekly meeting is the only place where they feel understood.

As the women sit together in a circle, sharing updates about their children and discussing the week’s challenges, their stories reveal the difficult reality many caregivers face across Kenya. The journey of raising a child with disabilities, they say, is filled with hospital visits, financial strain, emotional battles, and societal stigma. Yet in this small gathering, they have created a safe space where pain is shared, and strength is built.

Among the mothers present that morning is Moureen Adhiambo, a 35-year-old resident of Mamboleo in Kisumu County. She begins narrating a journey that has tested her strength in ways she never imagined.

“I am 35 years old, living in Mamboleo here in Kisumu. I have a child with cerebral palsy and sickle cell disease at the same time. He is my third-born child, now six years old, “ Moureen starts off.

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• The harsh reality of living with cerebral palsy

According to the Centers for Disease Control and Prevention (CDC), cerebral palsy affects 1-4 children in 1000 globally. CDC considers CP as the “most common motor disability in childhood.”

The World Health Organization (WHO) notes that despite declining cases of CP globally, the numbers are now rising in both developed and developing nations. The health body attributes this trend to maternal age, survival of preterm babies, and falling birth rates.

According to Save the Children Kenya, there are no official statistics on the prevalence of CP in the country, but some experts estimate that about 3 in every 100 children in Kenya live with the disorder.

Moureen recalls that when she first gave birth to her son, everything appeared normal.

“When I gave birth, my baby was just okay, and nothing seemed wrong. I was happy like any other mother who has just welcomed a child into the world,” she remembers.

But as years passed, her child’s health began to change in ways she could not immediately understand.

“When he was around three years old, he started developing severe malaria. As a loving mother, I rushed him to the hospital to receive treatment,” she says.

At first, she took him to a nearby dispensary. But the condition worsened, and doctors referred them to a more advanced facility for further tests.

“At the hospital, they did several tests and confirmed he had severe malaria and pneumonia,” she explains.

However, the diagnosis did not stop there.

“During the same visit, the doctors told me that my child also had  sickle cell disease. This was in 2021,” she says.

The news shattered her.

“As a mother, I felt completely broken. I cried many times and kept asking the medics what I could do to help my child,” she recalls.

Doctors advised her to begin regular clinic visits and medication to manage the sickle cell disease.

“They told me to start booking for clinics and that he would need medication to help control the condition,” she says.

Not long after that diagnosis, Moureen began noticing worrying developmental delays.

“My child could not eat well, and he was not able to sit on his own. This was the stage when children normally reach important developmental milestones,” she says.

Her son was also unable to speak like other children his age.

“I remember one medic even asking me if I was the mother of the child because he could not eat by himself,” she says.

After further medical evaluation, doctors informed her that her child needed therapy sessions and long-term care.

“They told me that I would have to start taking him for therapy sessions and that he would be on medication to control the sickle cell disease,” she explains.

Since then, Moureen’s life has revolved around caring for her child.

“We have been attending therapy sessions up to today. We normally go to Jaramogi Oginga Odinga Teaching and Referral Hospital for treatment,” she says.

But the journey has been far from easy. Accessing medication remains one of the biggest challenges.

“For example, Hydroxyurea, which helps control sickle cell disease, is often not available at the hospital pharmacy. We have to buy it from chemists, and it costs about Sh1,500,” she explains.

Other medications add to the burden.

“The drugs that control convulsions cost around Sh2,500. During clinic visits, one sometimes needs to have at least Sh500 for other medicines,” she says.

The financial pressure, she adds, is constant. Over the years, her son has also experienced repeated sickle cell crises.

“When his eyes start turning yellow, I know a bad crisis is coming. That means we must prepare for hospital visits and sometimes admission,” she says.

Last year brought one of the most difficult moments of her life.

“In August last year, his eyes changed, and he could not see properly. I rushed him to the hospital, where he was assessed. At one point, he even went into a coma,” she says.

Although he later regained consciousness, Moureen realized something was still wrong. “I tried to check whether he could see me, but there was no response,” she says.

Doctors initially reassured her that the child was stable, but she still felt uneasy. “My heart told me my child was not okay,” she says.

Eventually, she sought further medical help at another referral facility before traveling to Tenwek Hospital.

“It was there that doctors confirmed that my child had lost his vision. The nerves connected to his eyes had been affected,” she says quietly.

The confirmation plunged her into deep emotional distress.

“I cried again. It was extremely stressful to hear that my child had lost his sight,” she says.

Today, her son has been living without vision since last year.

“Raising a child with two disabilities: cerebral palsy and sickle cell disease is very difficult,” she says.

Beyond the medical challenges, Moureen says she has faced stigma even within her own home.

“My husband has never accepted that our child has cerebral palsy,” she says.

At one point, she recalls, he blamed her.

“He told me that I was the one giving birth to children with cerebral palsy. That statement really broke my heart,” she says.

The criticism from family members and society often pushed her into isolation.

“There were times I locked my child inside the house so that I could go to places like the market or church alone,” she admits.

But eventually she realized that hiding her child was not the solution.

“I came to understand that people will always talk. I cannot allow their words to make me abandon my child. I love him, and he is actually the most loved child in my family,” she says.

Her daily routine now revolves entirely around caregiving.

“My day starts very early in the morning. I feed him first, and that alone can take almost one hour,” she says.

After feeding him, she cleans him and performs therapy exercises at home.

“If it is not a hospital day, I try to do some physical therapy exercises with him,” she explains.

She remains constantly alert to signs of illness.

“When I notice symptoms like yellow eyes or coughing, I rush him to the hospital quickly. If I delay, the condition can worsen and lead to admission,” she says.

Despite the challenges, Moureen says the support group she attends every Saturday has helped her regain strength.

“We have formed a self-help group here in Kisumu made up of women raising children with conditions like cerebral palsy, sickle cell disease, and other mental health challenges,” she says.

The group has been in existence for about a year and has become a vital support system for caregivers.

“We meet every Saturday here at the sports complex to encourage each other,” she explains.

During the meetings, mothers openly discuss the struggles they face.

“We talk about the challenges in our homes, including issues in our marriages and the difficulties of caregiving,” she says.

For Moureen, the group has provided emotional healing.

“When we share our stories, we feel less alone,” she says.

However, she believes caregivers still need more support.

“If someone could train us how to conduct therapy sessions at home, it would help us a lot because therapy services are becoming expensive,” she says.

She also appeals for organizations to support children living with sickle cell disease by providing medication.

“That support would make a huge difference for families like ours,” she says.

Another mother seated beside Moureen nods in agreement. She introduces herself as Dephna Omondi.

“I am 31 years old, a resident of Kisumu County, and a mother of three. My third-born child has cerebral palsy,” she says.

Her story began in 2022 when she went into labour.

“The delivery was safe, but I had prolonged labour,” she recalls.

Her son did not cry immediately after birth.

“It took around ten minutes before he cried. At the time, I did not take it seriously because I thought as long as he cried eventually, everything was okay,” she says.

But two weeks later, she noticed something unusual.

“My baby would cry continuously, and it happened many times,” she says.

At first, she assumed it was normal infant behavior.

However, as months passed, she began noticing physical signs that worried her.

“His neck was not straight, and his eyesight also seemed affected,” she says.

Friends and relatives initially dismissed her concerns.

“They told me the baby was still young and would grow and become stable,” she says.

Even a pediatrician initially reassured her.

“But deep inside I knew something was not right because he was not developing like my other children,” she explains.

Determined to find answers, she returned to the hospital for further evaluation.

“Doctors did several assessments and later referred us for an MRI scan,” she says.

The results confirmed that her son had suffered birth asphyxia.

“They told me that parts of his brain had been damaged because he lacked oxygen during birth,” she says.

The diagnosis was eventually confirmed as cerebral palsy.

“When doctors told me that the damage could not be reversed, it was heartbreaking,” she says.

Since then, she has been navigating the challenges of raising a child with special needs.

“My husband also struggled to accept the situation at first,” she says.

The financial burden of treatment has been heavy.

“My child takes about three different medications every day,” she explains. Therapy sessions are also essential but costly.

“We are supposed to attend therapy sessions three times a week,” she says. Each session costs around Sh750.

“When you calculate the total, that is more than Sh2,000 every week just for therapy,” she says.

When medication, diapers, and transport are added, the expenses become overwhelming.

“This condition drains you financially,” she says.

It was these shared struggles that inspired her and other caregivers to form a support group.

“We started this group one year ago with just five women,” she says. Today, the group has grown as more caregivers seek support.

“We call it Pamoja Caregivers because it brings us together like a small family,” she explains. Members meet regularly to encourage each other and share experiences.

“Raising a child with a disability is something you learn every day,” she says.

The group also runs a table-banking initiative.

“Each member contributes about Sh500 or even less depending on their situation,” she says.

The money helps members access small loans.

“We use it to buy medication or start small businesses,” she explains.

Everlyne Wepukhulu, another caregiver, has been on this journey for more than two decades.

“I am a mother of three, and my firstborn child has Down syndrome and autism. He is now 22 years old,” she says.

Her son was born at home with the help of a traditional midwife.

“When he was born, he had a small head, and he did not cry immediately,” she says.

At first, she did not realize anything was wrong. But during clinic visits, she began noticing whispers from other women.

“That is when I realized something serious might be happening,” she says.

As her son grew older, the developmental differences became clearer. Although he could walk and talk, the disability gradually became more noticeable.

Her husband eventually abandoned the family.

“He said he had never had children with disabilities, and he left,” she says.

She has raised her children alone ever since. Despite the challenges, Everlyne says joining the support group has helped her heal.

The table-banking initiative has also helped members cope financially.

“We contribute money and give loans to each other. It helps us support our children,” Everlyne says.

Her message to other mothers is simple.

“Having a child with disabilities is not the end of the world. Do not hide them. Join support groups and learn from others,” she says.

Medical experts say cerebral palsy is a neurological condition that affects movement and posture. According to paediatric neurologist Katherine Oyieke, the term “cerebral” refers to the brain, while “palsy” refers to disordered movement.

“Cerebral palsy is a group of neurological disorders that affect movement and posture and usually appear in infancy or early childhood,” Dr Oyieke explains.

The condition occurs when the developing brain is damaged.

“This damage may happen due to lack of oxygen during birth, infections, severe jaundice, or complications during pregnancy,” she says.

Children with cerebral palsy may experience stiff muscles, poor coordination, delayed developmental milestones, and difficulty with speech or movement. Some also develop epilepsy or learning difficulties.

Although cerebral palsy is lifelong, it does not worsen over time.

“The brain injury happens once during development and does not progress,” Oyieke says.

However, early diagnosis and therapy can significantly improve outcomes.

“Early intervention allows therapies to begin when the brain is still adaptable,” she explains.

Treatment often includes physical therapy, occupational therapy, speech therapy, and assistive devices. But access to these services remains limited.

“Kenya still faces shortages of specialists such as paediatric neurologists, occupational therapists and speech therapists, especially outside major cities,” she says.

The emotional toll on families is also significant.

“Mothers of children with cerebral palsy often experience high levels of stress and depression because of the medical and financial demands,” she says.

Still, recent policy changes offer hope.

“The Persons with Disabilities Act 2025  provides stronger protection for the rights of persons with disabilities in Kenya,” she says.

For the mothers gathered at the sports complex in Kisumu, however, the struggle continues every day.

Yet, as they sit together sharing laughter, tears, and encouragement, one thing becomes clear: their strength lies in unity.