My son's battle with epilepsy

My wife had I had lived in denial for a long time. None of us wanted to face the reality that our son, Antony Mungai was epileptic. Mungai is now 15 years old and has gone through a nightmare more from the epileptic upshots than the illness itself. We have had to deal with the effects of epilepsy such as burns, bruises and other injuries that he gets when he gets an abrupt seizure. It is from such a seizure that Mungai has spent over eight months in different hospitals nursing severe fire burns.

For a fact, having a child with epilepsy requires a lot of effort, patience and money. This is a combination my wife and I cannot afford because we are peasant farmers and parents to seven children with Mungai being the third born. We have been relying on well-wishers since we detected Mungai's illness when he was only three when he suffered his first seizure.

We assumed that it was ordinary fainting but nevertheless took him to the nearest Kaguku dispensary where we were referred to Kilimambogo Hospital where he was put on treatment. Mungai's memory started lapsing and his speech became uncoordinated. I wish we had sought a second opinion then. The medics had hinted that Mungai's condition emanated from a 'family situation'. We didn't know what that meant but we took Mungai home and resorted to praying for him. We engaged different religious leaders. Mungai however continued having seizures but what caught our concern particularly was the child's lethargy. He had lost energy and was not active or playful like children his age. At school, the head-teacher told us that the boy was mentally incapacitated and that we should enrol him in a special school. This hit us like a thunderbolt because we knew the expenses in a special school would be overwhelming. At age 12, Mungai had improved a lot and could do simple house chores and would even till the gardens. I then came to learn that Mungai's cousins from his paternal grandparent also suffered epilepsy.

On a rainy afternoon in November 2016, Mungai and his siblings had finished tilling and had gone to warm food for lunch. After they had eaten Mungai decided to keep himself warm by the fire because it was still cold after the downpour. His siblings went outside to play. Suddenly they heard a bang and when they rushed to the kitchen, they found their brother writhing in blazing fire. By the time they shouted to alert us, the boy had burnt his hand so severely that it was almost falling off. We put him on a motorbike and took him to a local centre where we were referred to the Thika General Hospital where Mungai was immediately admitted. After three weeks, the hospital suggested that my son had to go through skin grafting which we could not afford. By then the wound was worsening and even one of the fingers had already fallen off.

We were soon transferred to Kilimambogo Hospital and when the doctors' strike happened, my son was left unattended for a couple of days. It was then I decided to try my luck at the Thika Nursing Home. He has had two convulsions at the Thika Nursing Home where he has been for seven months now.

Though the burns have not yet healed completely, he was discharged two months ago but the hospital fee has risen to almost Sh400,000. I have had several fundraisers but the most I got was Sh50,000 which I paid but the bill keeps rising. I have tried on several occasions to approach the local leaders to no avail. The NHIF card that I got for my son expired after 180 days and can only be renewed after one year. I keep appealing to well-wishers to assist me in meeting the bill.

At home, we are trying to put up safety measures in place so that when he comes back home, he will be safe and we won't have a repeat of such an incident. For example we are thinking of having a special bed that will keep Mungai safe even when he is sleeping alone. We are also planning to take Mungai to a special school so that he can meet and make friends with other challenged children. All this will cost us a lot of money but we have held onto faith that one day God will send people to help us meet these expenses. My earnest prayer is that I can get a job so that I can take good care of my son without having to go through the humiliation of begging.

I miss home so much. Most of all I miss playing with my siblings and being with my mother. I like doctors so I hope one day, I will study and become a doctor"- Mungai

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Understanding Epilepsy

Epilepsy is a chronic neurological disorder illustrated by sudden unprovoked recurrent seizures with or without loss of consciousness. Epilepsy can also manifest as involuntary muscle contraction, spasms and anxiety which can cause temporal confusion.

Neurological experts have shown that stroke is a leading cause of epilepsy in adults older than 35 years. According to a report by Mayo Clinic the symptoms of epilepsy are conspicuous and can enable an individual to seek medical intervention in time. The symptoms include temporary confusion, a staring spell, seizures that prompt an uncontrollable jerking movement of legs and arms, loss of consciousness and psychic symptoms. The experts advise that should an individual notice such symptoms, they should seek medical intervention at the soonest. The most common causes of epilepsy include meningitis, encephalitis (inflammation of brain), HIV&AIDS, cerebral malaria among other life threatening illnesses. There are other people who develop seizures when exposed to certain situations or conditions. The neurologists note that people who don't adhere to medication well or stop long term treatment suddenly are likely to develop seizures. Another group of people likely to develop seizures are drug and substance abusers especially during withdrawal.

First aid

These can be given by anyone near the epileptic patient. • Stay calm • Clear the area of any objects • Note the time the seizure attack started • Address them calmly if they are blank or confused and gently take them to a safe place • Cushion their head with something soft • Don't put anything in their mouth • Check the time again to confirm if the seizure has taken more than five minutes, if so call an ambulance • After the seizure has stopped, put them into a recovery position • Stay with them until they gain full recovery.