Shammah Munguseni Tutu and his mother Peace Achema, during the
interview. Achema says it is not easy coping with a child of his
condition but has learnt to adjust herself and the sorroundings to
ensure her son is not in danger.
By CHRISTINE KATENDE
It all begun with frequent sickness. Achema says,
they visited paediatric hospitals, but the efforts yielded no results.
Doctors would only diagnose her son, Shammah Munguseni Tutu, with
malaria. Although they could not find any traces of malaria, the
treatment for the disease continued. The more doctors treated, the more
the little boy deteriorated.
At that time, Achema, a lawyer, was working in
Pader District as a Gender Programme Associate with the United Nations
Population Fund. Her husband, Patrick Achema, currently a reverend
attached to Arua Diocese, was a lecturer at Institute of Survey and Land
Management, Entebbe. Doctors later checked the boy’s glucose levels and
discovered that his sugar level was so high and only insulin could
lower it. They were referred to Nsambya hospital, and by the time they
got there, their son was in a diabetic coma.
Given the fact that Tutu was the youngest diabetic patient the hospital had ever received, experts had to assemble and discuss his treatment. His mother recalls that he was later put on an insulin-pumping machine after which he regained consciousness.
Given the fact that Tutu was the youngest diabetic patient the hospital had ever received, experts had to assemble and discuss his treatment. His mother recalls that he was later put on an insulin-pumping machine after which he regained consciousness.
He was discharged after a week and three days.
“That marked the beginning of the journey where doctors had to train us on what to do, when and at what time. The kind of diabetes he was diagnosed with, Type 1 Diabetes is where the pancreas completely collapses and no drug can boost it apart from insulin,” she says.
“That marked the beginning of the journey where doctors had to train us on what to do, when and at what time. The kind of diabetes he was diagnosed with, Type 1 Diabetes is where the pancreas completely collapses and no drug can boost it apart from insulin,” she says.
Achema’s family and friends were shocked at the
news since none of them had ever heard of such a thing happening to a
child of that age. “Some thought it was either a trial or punishment
from God. It seemed so hard. Those first days, we would panic whenever
he collapsed due to hypoglycaemia (low blood sugar),” she says
.
.
Although the family home was in Kampala, Achema
travelled with Tutu back to Pader for work, because she couldn’t trust
him with anyone. However, she was later forced to bring him back to
Kampala where he could get good medical services in October 2010. In
Kampala, she had to train her husband, relatives and housemaids on how
to deal with Tutu. Although she did her best, her son’s attendants
frequently called her if they failed to handle the situation.
Learning to manage the condition
When Tutu gets hypoglycaemic (low blood sugars), his mother says that he is given something sweet like soda, a sweet or glucose to raise the sugar levels. When the level is high, he receives an insulin injection that brings it back to normal. He should have a nutritious well-planned meal three times a day.
When Tutu gets hypoglycaemic (low blood sugars), his mother says that he is given something sweet like soda, a sweet or glucose to raise the sugar levels. When the level is high, he receives an insulin injection that brings it back to normal. He should have a nutritious well-planned meal three times a day.
In the mornings, he takes porridge with milk and
bread. At break time, he takes an apple or banana, egg and a cup of
milk. Towards lunch, he takes milk and at lunchtime, he eats rice with
beans or meat or chicken. Around 4pm, he takes porridge with milk and
bread to maintain the sugar levels. For supper, he is served with
matooke or rice with any prepared sauce, though has to take a glass of
milk after every two hours all through the night.
Before Tutu eats anything, a blood test should be
done to ascertain the kind of snacks or food to be served him. What he
eats depends on whether his sugar levels are high or low.
Tutu, who is now six years old in primary one at St John’s Primary School, started school in 2010 at Kissyfur International School in Entebbe. His mother trained the teachers on what to do when he gets an attack.
Tutu, who is now six years old in primary one at St John’s Primary School, started school in 2010 at Kissyfur International School in Entebbe. His mother trained the teachers on what to do when he gets an attack.
“I had to take time to explain thoroughly about
the type of diabetes the boy had because it was not common. I also
cautioned the teacher never to give him any herb in a bid to save his
life. I would pack the insulin and glucose to use while at school and it
is what I still do up to now,” she explains.
Tutu can inject himself when it is time to do so. “Normally I inject myself when the insulin is given to me and if I feel like collapsing, I take a sweet, soda or glucose, then get back to normal. But when I am at home, I rush to the maid for help the moment I get a weird feeling,” he says.
Tutu can inject himself when it is time to do so. “Normally I inject myself when the insulin is given to me and if I feel like collapsing, I take a sweet, soda or glucose, then get back to normal. But when I am at home, I rush to the maid for help the moment I get a weird feeling,” he says.
“In most cases when our neighbours want to give me
something, I tell them that I am diabetic, so I ask them to first call
my mother who sends a maid to test the blood before I can eat anything.
Other people who know my problem don’t bother giving me anything because
they know that I will go into coma,” he says.
Tutu does not really understand his sickness. His
parents only told him that he has a sickness that hinders him from
eating sweet things, and other stuff with direct sugar like sweets,
cakes, candies, among others. He only eats them when his sugar is low.
But just as any curious child would be, Tutu persistently asks his
parents why his life is the way it is. “Why is it me in this condition?
Why am I diabetic? I don’t like this sickness!” he says.
He normally misses out on cakes and sweets while
at parties compared to other children. He is sometimes jealous of his
little brother who is not diabetic and also blames the parents for
having not stopped the disease.
His questions are usually answered by explanations
and he is shown him videos of disabled children that gives him
strength to know that he can do things other children can’t do, like
playing and writing.
Sometimes, he is short tempered and gets hostile. This has affected his performance because he even leaves class or the exam room when he gets mood swings.
Sometimes, he is short tempered and gets hostile. This has affected his performance because he even leaves class or the exam room when he gets mood swings.
Achema says she has to keep reminding the maids to
understand his situation and also take blood tests whenever he turns
hostile. “We sometimes quarrel from his school in Entebbe, up to home
but I have always controlled my temper when such happens because I now
know the kind of child I am dealing with,” she says.
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