Parenting a child with Epilepsy: Mercy Kwekwe’s story

Having a child with epilepsy in a family affects everyone in the house, a fact that Fredrick Mboya has had to cope with for over ten years now after his youngest sister, Mercy Kwekwe, was diagnosed with epilepsy at age 2.

From learning and understanding epilepsy to always being there for their youngest sibling, Mboya, now an epilepsy champion, and his family have had to come up with ways of looking after Mercy including talking to her about her condition.

“I quit my job in 2012 to be home and help my mum take care of our sister. Being the eldest, I saw my mum struggle with taking care of Mercy over a condition we didn’t know much about,” Mboya says.

Mercy was having severe seizure attacks every 20 minutes and she had injuries all over her body and at one point she had the worst incident when she fell over a burning charcoal stove and got very serious burns.

Protection against stigma and discrimination

While Mercy is now stable and can pretty much move around the house by herself, she is yet to master how to decently present herself and with her moods always changing, it is uncommon for her to play with other children.

But mood swings are not the only challenge Mercy has to keep up with when it comes to socializing.

Mercy occasionally reaches out to children around her neighbourhood for some playtime oblivious that she is unwelcomed to play with them.

Parents in the neighbourhood are overly cautious of letting their children play freely with Mercy, and some hang around when the kids are playing. Others go ahead and warn their children against playing with her.

There isn’t much that Mercy’s family can do about her being portrayed as dangerous in the neighbourhood as not even her family is spared.

The community around them got quite judgemental of Mercy’s condition, some convinced that she was cursed or had been bewitched because of her many wounds and injuries.

Comments like “who’s child is this mishandling our children” brought stigma to the family with some neighbours openly questioning why only one child was sick in the family, implying that Mercy could have been used in some wealth-hunting shenanigans.

Left with no option but to find a common ground with the community, Mercy’s mother devised a way of handling this discrimination – staying away from village gatherings and public events.

Mercy isn’t very stable and when there is no one to stay back at home with her, her mother always tags her along when on her endeavours. Unfortunately, this only draws negative attention as people start questioning everything about the family.

“As a parent with a child living with epilepsy, you need to understand the condition and be conversant with the treatment options, causes and know the finer details about epilepsy,” Dr Eddie Chengo, an epileptologist based at the Epilesy and Neurology Centre in Malindi says as he explains the need for parents to understand what is going on with their child so that they can know how best to handle them.

People living with epilepsy facing stigma is not a new challenge and though unaware, some parents play part by enabling the vice.

“Protecting your child from stigma starts at home in how you treat them,” Dr Chengo explains.

“You need to be cautious but you must not be over-protective. You need to let them understand why you want them to behave in a particular way. Explain to them that you are trying to keep them safe and have them understand why.

“Other than making them understand that they have the condition and what it means for their safety, as a parent, you need to take centre stage in championing epilepsy awareness starting from within the house.

“You need to champion positive talking within the household and lead discussions where you talk openly and positively about epilepsy within the house. Encourage your child and his or her siblings to always look after each other.

“Since you are not going to always be with your child, you may need to also involve their friends by informing those they are likely to hang out with about their condition.

“Tell your child that they might need to keep their friends involved. This doesn’t only help protect the child from discrimination but also helps to guarantee their safety. Their friends will be aware of what is going on and can help in ensuring their safety.” Dr Chengo elaborates.

Safety

To ensure Mercy is safe at home, where she spends a majority of her time, her family had to do major changes at the home including restructuring of the house.

“The house is tiled, so we covered the floor with soft carpets covering major parts of the house from the sitting room to the bedroom where Mercy hangs out a lot,” Mboya says.

Cushioning the floor helps protect Mercy from injuries in case of a seizure attack but safety from falls and knocks doesn’t end there. They also went for seats and couches that don’t have bare ends and are covered all round with cushions.

In the bedroom, they had to modify her bed and get her a high-density mattress with no pillows to protect her from sudden unexpected death in epilepsy (SUDEP).

Mercy has been seeing a specialist and thanks to her medication, she has now been seizure free for four years. Overtime, her family has also learnt her seizure triggers – major excitement or disappointment.

Being very fond of Mboya, since he is almost always out of home, they have had to come up with a way of maintaining contact.

Since she can handle a phone, she calls him from time to time to check on him and ask him when he is coming back home.

Even so, whenever Mboya wants to get her a present, he has to consider getting one that can be revealed to her slowly without triggering any major excitement.

“For instance, I bought her some kanga (a colourful fabric similar to kitenge) from Tanzania but I can’t just tell her that I have a gift for her. I will have mum go with her to a tailor to take her measurements so that she knows that there is a dress somewhere being made for her,” Mboya expounds the measures they have to go as a family to help Mercy stay safe and seizure free.  

Other than treatment and being seizure-free, children with epilepsy are likely to be hyper-reactive and this can be a result of the condition or a side effect of the epilepsy medication, as Dr Chengo explains, and Mercy has not been spared.

“As a parent you need to support your child and understand their behavior. They could be having difficulty sleeping or be sleeping too much. Sometimes they can be too tired to help with the house chores or be showing signs of depression and prefer self-isolating.” Dr Chengo says adding that “these character traits are likely to affect their schooling as their concentration span can be greatly impacted.”

Education

As a result of regular seizures, Mercy suffered stunted development as her coordination was affected. She could not talk well or do some of the things children her age did. Her family tried placing her in different schools.

Whereas she doesn’t have seizures anymore, she was still quite restless in school and the long sitting hours in class were not favouring her.

“When we took her to school, she struggled to stay focused. Whenever he got tired, she’d just walk out of class and join any class or pupils who would be outside class playing. She basically couldn’t concentrate when other pupils were outside playing, she’d step out to go join them,” Mboya narrates.

While attending normal schools wasn’t working for Mercy, homeschooling seemed more effective and since starting her homeschool program, she is getting better at reading and writing. Her father, a teacher, helps her learn at home as he takes her through the basics of the school curriculum.

Her mother and sisters, on the hand, are helping her with basics such as how to take care of herself by handling her personal hygiene while also explaining to her the changes happening to her body, and she is fast learning.

Now 14, Mercy is pushing herself to get better and she is headed for the best. Mboya says, “She can now help with house chores here and there. The other day she was doing utensils in the kitchen sink while mum was cooking.”