Feature: Kenyans flock to posh salon to gain insight on managing cerebral palsy

By Bai LinUnreguser

NAIROBI, Nov. 9 (Xinhua) -- The Barrack Museka (BM)'s cerebral palsy salon located on the eastern fringes of Kenya's capital Nairobi has become a favorite destination for anyone curious to learn about the neurological disorder.

It was established early this year by Christine Arunga Mutola, a 39-year-old health advocate whose son died four years ago from a disease that attracts profound stigma among Kenyan communities.

"Our society is yet to fully accept and accommodate persons with cerebral palsy. I know this with a painful clarity as I raised a son who was misjudged and looked upon with suspicion," said Mutola.

Kevin Nzioka, a Nairobi-based physician, said that cerebral palsy is a heterogeneous group of conditions involving permanent, non-progressive motor dysfunction that affects muscle tone, posture and movement.

According to Nzioka, the conditions are caused by abnormalities of the developing fetal or infant brain resulting from an array of causes.

"Cerebral palsy may affect a child before birth or after, it is important to note that there is no specific drug that can reverse the condition. However, there is available treatment and care to maximize a child's independence in their daily functional activities," said Nzioka.

Determined to raise her child, Mutola made a few sacrifices including quitting her formal job in order to have adequate time to observe her offspring's development.

"The hospital informed me that my child would not be 'normal' and true to that, when he reached a year, he did not walk like other children. The stark reality of his condition hit home," said Mutola.

"I suppose over the next few years, I learnt not to recognize milestones like other parents but instead celebrate life," she added.

After her son passed on, Mutola formed Barrack Museka Foundation which later birthed BM salon.

The salon has been integral in financing the objectives of her foundation and economically empowering women with children suffering from cerebral palsy.

"Proceeds from the salon are channeled to funding projects by the foundation hence we encourage everyone to come and make their hair here .The salon is open to all," said Mutola.

Currently, the foundation supports 12 members who come from under-privileged backgrounds with diapers, medication and therapy sessions

Mutola hopes she will soon be able to expand her reach and rope in more needy families.

At the moment, she is calling onto well-wishers to partner with her as she continues to champion for persons living with cerebral palsy.

The prevalence of cerebral palsy in Kenya is not known and pundits argue that lack of data will undermine the enactment of policies that will address issues surrounding the disease in the country.

There are 17 million people suffering from cerebral palsy in the world, according to the U.S. Center for Disease Control (CDC) and Prevention.

"The lack of public awareness on cerebral palsy is concerning, people have chosen to hold on to perception more than the reality and the perception is that children or adults with cerebral palsy are a liability and should be hidden away far from the society," said Mutola.

"The community should embrace children with this and any other kind of developmental disability, they are not contagious. You will not get the condition by being kind to them," she added.

Gloria, a 13-year-old pre-teen with cerebral palsy beamed when her father entered their home and it seemed as though she wanted to stretch out her hands and pull him to her, like a daughter would to his beloved father.

The bubbly girl has a severe case of cerebral palsy but was born without complications until she attained six months when she developed a heart condition.

According to Gloria's parents, this was the beginning of a protracted search for medical attention.

"We spent six months in hospital, those were excruciating and mentally draining times in our lives, while she was hospitalized every phone call from the hospital sent us into panic," said Elijah Mokua Nyaigoti, Gloria's father.

Mokua, the security personnel, says that news of Gloria's impairment was frightening and disheartening at the same time.

"I was afraid she would develop complications at home and I would not be in a position to assist her. She was fragile and susceptible to infections. To Gloria even a mild flu is life-threatening," said Mokua.

Gloria's parents said that hospital treatment and medication is expensive and one major concern to them happens to be the thinly spread out therapy facilities in the country.

"Therapy is integral to the management of our child's condition and because we cannot afford paying for the services, I have learnt how to do it. I suspect I am even more thorough than a certified therapist," said Catherine Awira, Gloria's mother.

Due to the emotional turmoil she went through, Awira's mental health took a nosedive but she is currently recovering and remains steadfast in raising her children.

Gloria's parents want the government to enact mechanisms that will subsidize the cost of medications for children suffering from cerebral palsy.

Additionally, they are calling upon the general public to desist from social stigma and unfair treatment of persons with mental impairment.

"I would love to see restaurants, amusement parks and schools that are inclusive so that children like Gloria are not always confined to the safety of their homes," said Mokua.

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