Sunday, May 19, 2024

‘How I survived early grave over Cerebral Palsy kids’

Every October 6, Judy Momanyi spares some time out of her busy schedule.

This is her day to celebrate her two children, a son and a daughter living with Cerebral Palsy.

October 6, is a day set aside for International Cerebral Palsy day, meant to raise awareness about the medical condition, and develop the quality of lives of people with the disorder.

And before Ms Momanyi could embrace this fact, she faced all manner of challenges an African woman can face in the eyes of family, friends and foes ignorant about this condition.

Cerebral Palsy is a group of disorders that affect the movement and muscle tone and posture, usually caused by damage that occurs to the immature, developing brain before and at times, at birth.

When people saw them, they called me names saying it is a curse, there is something I did wrong that’s why they are the way they are

Judy Momanyi

Ms Momanyi is 30 year old single mother of three children, residing in Kisumu.

Her two children are part of the statistics of the over 17 million people affected by CP around the globe.

Ms Momanyi considers her two children; Joash, 16, and Melvin, 14, as CP warriors.

On the October 6, 2022, Lake Region Bulletin accompanied her as she joined her kids at St Anthony Special School in Awasi, Kisumu to celebrate the day.

The love the other kids have for her is immeasurable as she shares with them some snacks.

She is not just a mother to her own kids, but to the other 37 kids with disabilities hosted at the facility.

But this is not who she was years back, to embrace the kids, she had to struggle, leading her into depression.

Ms Momanyi with her kid

CP Journey

Ms Momanyi got her first kid while only 15 years of age.

She was orphaned, and just a naive Standard Six pupil.

She however loved and admired her bouncing baby boy.

Little did she know that the kid had some complication.

It was while the baby was three or four years old that she noticed this strange signs.

And when she gave birth to her second born daughter, a sister’s friend noticed that the two kids had some similarity.

They could not talk, walk or do anything for themselves. I slowly started embracing their condition and now, I’m okay with it

Judy Momanyi

The friend advised Ms Momanyi to seek medical attention for the kids.

It was then that doctors diagnosed both the kids with Cerebral Palsy.

But ignorant family, friends and relatives had another explanation for the condition.

“When people saw them, they called me names saying it is a curse, and that there is something I did wrong that’s why they are the way they are,” she adds.

The shock from the condition and the stigma sent her into depression.

She enrolled for therapy for several months before she could embrace the condition.

“They could not talk, walk or do anything for themselves. I slowly started embracing their condition and now, I’m okay with it,” she says.

Stigma

Ms Momanyi says due to limited information about this condition, the society has been inconsiderate to embrace those living with the condition.

“Having friends too is not easy, at times you have a friend who looks down on you because of the kids and fears it might fall on them too,” she adds.

Very few people understand it is a brain disorder and therefore few accept the kids.

I know others are going through what I went through, so I do some shows with them just to help them understand the disorder and see the kids as normal

Ms Momanyi

From her interactions with some of the parents, she says many are in denial and prefer locking the kids up in a room to taking them to schools where others are.

“When I am with them in public, people ask funny questions, some thinking they are sick,” she narrates.

This stigma made Momanyi to take an initiative to open her arms to parents of children living with Cerebral Palsy, where they share about their experiences.

“I know others are going through what I went through, so I do some shows with them just to help them understand the disorder and see the kids as normal,” she says.

She noted that except for occupational therapists, some doctors are unaware that kids are passing through such experiences. 

COST

Judy pays a lot of fees for her two children to cover for their studies and therapy sessions in school.

Before they started school, she used to take them to Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH) for the sessions.

“It is not easy to travel with them by public vehicles, due to the stigma and the fact that their muscles have been used to being a certain way. They cannot sit on motorcycles,” she said.

She narrates an experience when she was traveling with her kids to school and she had to stay at the bus stage for two hours as drivers denied them access to their vehicles.

Whenever she can’t access a private vehicle, she has to pay a private therapist Sh2000 per child, and bring them to the house.

“We need to fight the stigma, and reach people in the society,” she says.

According to Robert Kipkorir, an occupational therapist at St Anthony, the children affected need constant therapy so the muscles do not harden or straighten.

Ms Momanyi notes that the cost of acquiring the wheelchairs specifically made with comfortable seats and belts for these children is relatively high, as high as Sh200,000.

Support System

Wilson Momanyi, Ms Momanyi’s brother, notes that the kids normally require a lot of care.

“It was sad to watch people tell my sister that the kids are bad omen, and a generational curse,” said Mr Momanyi.

Since the kids are 100 percent dependent, Mr Momanyi and his siblings had to come in and support the sister financially and mentally.

“This is a struggle. You know she is a single mom, no caregiver wants to stay for long. There is a time she even went into depression,” he pointed out. 

According to Mr Momanyi, the government has not taken much consideration to this disability and more so schools that have such kids.

I am proud to be a CP mum and appreciate it because I know that God has a reason for giving them to me

Ms Momanyi

To him, society has made it seem like the people who have these kids should be excommunicated as they do not belong.

He said Cerebral Palsy is something that needs address and awareness, adding that the kids should be brought to school.

“Here they are shown love and care and not locked in rooms to wait for death,” asserts Momanyi.

“I am proud to be a CP mum and appreciate it because I know that God has a reason for giving them to me,” says Ms Momanyi.

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