Saturday, January 19, 2008

Epilepsy made her a lonely child in Uganda

SHE sits alone most of the time, hardly plays with her friends but watches them from afar.
She is afraid of strangers and will hesitate to talk to one; until she realizes that you are harmless. She is kind little girl.

Priscilla Apio, 15, was born normal just like any other child.

Unfortunately one and half years down the road, the bouncing baby girl developed cerebral malaria, which almost claimed her life.

"We took her to hospital, got treatment and her condition improved. Little did we know the worst was yet to come" her mother, Mrs Rosemary Okware says.

"She started acting strange. We again went to several doctors for help but all in vain. It was until we went to Mulago Hospital where she got a CT scan (brain scan). We were told she had frontal left epilepsy," her father Mr Jofisa Okware says.

Epilepsy, according to experts is a common neurological disorder that causes recurring seizures.
A seizure is a temporary abnormal electro-physiological phenomenon of the brain. It can make some people lose consciousness and run, vomit, bite their tongue, urinate or even kick violently.
Seizures happen when clusters of nerve cells, or neurons, in the brain send out the wrong signals.
Apio was supposed to have a third brain scan but due to financial constrains, it was not done.
"The doctors told us that if she had the third scan and they found out whatever they wanted to find, she would be operated upon abroad. But we knew we could not afford it so we gave up," Mr Okware says.

Apio's life has changed. She gets seizures now and then.

To shorten the frequency of the seizures Apio has to take medicine every day, a thing she started at one and half years of age.

Unlike other epilepsy cases, Apio neither urinates nor vomits. She gets up on her feet and runs anywhere.

At home, her parents and siblings hold her to prevent her from running into objects that can cause her injury like fire, sharp instruments and branches or pits.

"When it comes to school, no body holds me. I run and fall down. When the attack is over, I get up on my own and rest under a shade," Apio says.

Her classmates at Kidoko Primary, in Molo Sub-county, Tororo District are now afraid of her.
"My classmates fear me because of my disease. If it (the seizures) comes while I am in class, they all run away and by the time I get back to my senses, I find my self either alone or with a few on lookers" she says.

"I feel bad when people run away from me. Some of them even call me a mad person.

"Some times I want to play with them but I can not because they fear me." This is why she has resorted to sitting and just watching from a distance.

During fruit seasons, she goes climbing mango and quaver trees, to give her classmates so that they can be friends with her "but they still fear me," she says.

She loves going to school, drawing pictures, teaching children much younger than her the alphabet and yearns to go to high school like her elder siblings and twin brother.

Sometimes she closes the world outside, the door, in an empty class and cries.

"I felt very bad when I made a random visit to her school and found other children in class and my daughter in an empty room...sitting alone, all by herself," her father says.

Apio did not sit for end of year 2007 examinations which would have led to her promotion to Primary Five.

"I wanted to sit for it but children feared me so I did not want to disturb them. Whenever the teacher is around they sit but murmur about me. When the teacher is not around they all run out and leave me alone".

"I want to tell dad to remove me from that school and take me to a school where people do not fear me," she says. Her current school is the fourth she has been to since she started going to school.
"Her case is unique and so she needs special attention. If we had the money we would have taken her to a special school where she would be attended to by teachers who handle children like her. But we are incapable of that," Mr Okware says.

"We shall be very happy if any Good Samaritans help give our daughter a future."

"We have gone to her school and asked the teachers to tell the pupils that epilepsy is not contagious but in vain. We have now left everything to God," Mrs Okware says.

Apio is just one example of people who are stigmatized because of illnesses they suffer.
"Let the government send special needs teachers to rural schools too," Mr Okware says.


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