Our daughter was diagnosed with Multiple Sclerosis 2 weeks to KCPE
Maureen Kangu received the call on a Friday evening in September 2018.
On the other end of the line was her 12-year-old daughter who sounded worried.
“Cindy called to say she was unable to write. I thought she was just tired as she had been studying hard for her KCPE exams which were barely three weeks away.”
At the time, Maureen and her husband Alexander Kyule were both lecturers and often worked late.
It was usual for them to speak to Cindy on phone in the evening on school nights as she was often asleep by the time they got home.
Therefore, Cindy’s call on that fateful Friday didn’t sound any alarm until her parents got home.
“The moment I saw my daughter; I knew something was terribly wrong. Her hands were numb. She said that her head ached. We thought she was suffering from the pressure of the exam and so we took her to hospital,” says Maureen
On arrival, their worst fears were put to rest after a doctor’s diagnosis showed there was nothing to worry about.
“The doctors did not find anything that needed urgent medical attention. They gave her some medication and we went back home.”
Two days later, Cindy was still unable to write or coordinate her hands’ movements.
Once again, her parents began to feel uneasy and they opted to seek medical attention.
“This time, we took Cindy to a neurologist who recommended we get an MRI done. During this period, she was admitted to the hospital for a week and put on steroids. They also took her test samples which were sent to South Africa for analysis and diagnosis.”
As Cindy lay in hospital waiting for the samples to be taken, her parents embarked on getting her registered for KCPE which was now two weeks away.
“Cindy needed to be registered as a special case, on short notice. Thankfully, the neurologist wrote us a letter that was delivered in person to the Kenya National Examination Council by a senior teacher from her school.”
Tough period
After one week, Cindy was discharged and went home to prepare for the exams while awaiting diagnosis.
“It was a challenging time but we kept praying and hoping. We distracted ourselves by helping Cindy revise and adjust to her new reality. She attended school but we briefed the administration about her condition. They provided a mattress to allow her to rest after sitting in class for a while. At home, we helped her with small chores like buttoning her shirt. Her hands got so numb that she couldn’t tell if something was falling off her grip.”
Cindy’s resilience kept her going despite the looming uncertainties.
“Soon the exams kicked off and we did all we could to make things comfortable for her. The teachers arranged for rest periods during exam time. The invigilators added more time to cater for the slow hand movements. They also allowed her to check the answers instead of the usual shading. Still, composition and Insha proved to be quite a challenge but our girl managed courageously.”
Cindy completed her exams successfully without any major hitch.
Although Alexander and Maureen celebrated Cindy’s accomplishment, another matter weighed heavily on their minds.
Diagnosis report
You see, Cindy’s diagnosis report had been delivered on the day she went to sit for her first paper.
They kept this to themselves so that Cindy could focus on her exams. It was not a good report.
“We tried to think of how we would break the news to Cindy but neither of us had the courage to do it. She had a doctor’s appointment coming up and we decided to let the doctor break the news to her, first-hand,” says Alexander.
Cindy Katuta during an interview at Nation Center on July 9, 2022.
Cindy’s test results showed she was suffering from multiple sclerosis (MS), chronic and progressive disease that attacks the body’s immune system by damaging nerve cells which in term disrupts communication between the brain and the other parts of the body.
Key symptoms of this condition may include numbness, severe fatigue, impairment of muscular coordination and blurred vision.
“Cindy asked the doctor a lot of questions, she is quick-witted. Still, none of what was being said made sense to her and we could see she didn’t quite understand what was happening to her body.”
The doctor recommended they start physiotherapy sessions. These sessions helped Cindy and her family come to terms with the diagnosis even as they researched what there was to know about MS.
A few weeks after the doctor’s appointment, the Ministry of Education announced the release of KCPE results.
Cindy waited with bated breath and this time, she received an excellent report. A shining silver lining to the cloudy situation at hand.
“Cindy scored 409 marks out of 500. She secured a spot in her dream school, Loreto High School. We were so proud of her for doing so well despite the challenges that rained on her a few weeks to the exam.”
Although they were elated about their daughter’s performance, Maureen admits they couldn’t help but wonder how she was going to cope in a boarding school so far from home.
“We wanted to take her to a day school closer to us where we could monitor her easily. She was not convinced and being a strong-willed girl, we knew we were not going to win this one. We had to support her decision to go to Loreto.”
Interestingly by the time Cindy was joining form one, symptoms had subsided.
“One thing about MS is that it comes and goes. During a relapse, the symptoms are so harsh that she is unable to function independently, but when they subside, it becomes almost impossible to tell she is unwell,” explains Alexander.
All the same, Cindy’s parents informed the school nurse about her condition even though she hadn’t suffered a relapse for nearly a month.
“For one year, Cindy didn’t experience a relapse. We were just beginning to think that all was well when she relapsed in her second year at the school. We took her to hospital and also came back to the school with a note from her neurologists indicating that Cindy was not to be seen by any other doctor,” says Maureen.
“The school calls anytime Cindy is unwell. Since the relapses returned, she has not had a single term spent entirely at school without coming home for treatment. Whenever we see a phone call from school, we know she needs to come home. Sometimes we go into panic mode, it is part of our reality,” says Alexander.
Initially, Cindy would be admitted for up to two nights at the hospital. This has scaled down to outpatient visits allowing her to resume her studies promptly.
Expensive treatment
Worrying about their daughter’s safety while in boarding school is bad enough but for Cindy’s parents, there is more; hefty medical bills.
“Shortly after the diagnosis, Cindy started taking disease modification drugs which combined with physiotherapy sessions, cost us up to Sh40,000 a month. After a while, the doctor upgraded her medication to the newest infusion treatment for MS. She receives it four times a year; in May and November. It is a costly drug because one dose is about Sh350,000 which means each year we pay Sh1.4million for this treatment.”
Cindy Katuta and her father Alexander Kyule during an interview at Nation Center on July 9, 2022.
Besides the MS treatment, Cindy began seeing a counsellor after the relapses started just to help her cope with the changes she was experiencing in her body.
Maureen and Alexander got a counsellor who had sessions with her at school for eight weekends.
“Somewhere along the counselling, Cindy began showing signs of depression and we decided to engage a psychiatrist. She was treated for six months and now she is doing really well, mentally and emotionally,” says Alexander.
Whereas Maureen and Alexander have medical covers—and they are grateful for that—some of the treatment costs such as physio sessions are pad out of their pockets. Thankfully, the journey has been bearable enough for them to keep going.
“The kind of people we have interacted with in this journey have been the best. From the medics who at times allow us to pay for physio later, to friends and family who time and again contribute towards Cindy’s medical bills. We count ourselves lucky,” says Maureen. On medical covers, Alexander adds,
“For a few lucky people like us, with insurance cover, perhaps circumstances may be bearable, but what happens to the majority who don’t? But even as we count ourselves lucky, we often pray that none of the rest of us in this family gets sick because Cindy’s treatments deplete everything,” says Alexander.
Lobby government
And that is why in August last year, he appeared before the Senate Committee, to lobby the government on subsidising MS treatment costs.
Finances aside, the couple is also grateful for the psychosocial support they have received from people around them.
“On my part, I have had no problem at work when it comes to responding to my daughter’s medical needs. When an emergency call comes, I have had no problem leaving work to go and attend to her. I come from a family where most people are college educated and Christians, and so when we broke the news to them, instead of them jumping into bizarre conclusions, they just did their research,” shares Alexander.
For Maureen, things haven’t been as easy, especially at the onset of this journey,
“When Cindy was first diagnosed, I was in a new job and didn’t know many people there. Besides, it was so scary that I didn’t know how to talk about it. People only got to know about it during our first fundraising to raise money for her treatment,” narrates Maureen. Her biggest blow was when a friend of hers blamed Cindy’s condition on witchcraft. “She even offered to take me to the best witch doctor from her village.”
Four years down the line, Maureen notes her daughter’s condition has been subsiding lately, especially since they upgraded the treatment.
Their initial worry was that the drugs could alter her body especially as teenagehood set in.
“She was a very tiny girl before and we were concerned about the drug’s side effects like a change in body size or something. That didn’t happen, she is responding well to treatment,” explains Maureen.
Indeed, Cindy says she leads quite a normal life at school and is keen to avoid stress which easily triggers the MS symptoms.
“At school, I wake up at 4 am, groom myself, go for my morning preps and attend classes. At night, I sometimes extend my study time, when my body allows me to do so. Also, I am assigned cleaning chores just like my peers . Sometimes it is tough because I tend to get fatigued, so I take a break.”
Maureen says minor adjustments have helped Cindy cope in boarding school.
“Balancing is a challenge so they allow her to wear crocs in school. She doesn’t stand during assemblies, again due to her inability to maintain balance.”
However, these are easy adjustments. The bigger fish to fry for this family has been people’s attitude. MS is an invisible disease and sometimes, people think Cindy is faking her condition.
“Even as a parent, I have had questions like, “are you sure Cindy is not taking advantage of you?” says Maureen. Alexander dismisses such insinuations briskly and adds,
“Cindy is so focused that even this condition has never held her back. In fact, the biggest challenge for us has been convincing her to slow down.”
Alexander and Maureen have two other children, Cindy’s younger siblings. Another tough nut to crack for these parents has been ensuring they don’t get too carried away with beating MS and forget to raise Kyle, 13 and Trixy,7.
“ We didn’t get it right the first time. I remember during the early days of the diagnosis, we spent endless hours by her bedside in the hospital. We were out of the house very early in the morning and back late at night, well past their bedtime,” says Maureen.
It didn’t take long for the children to express their discontentment.
“My aha moment was when Trixy asked why we were always going to see Cindy. I knew something had to change.”
This prompted two changes; First, Alexander and Maureen came up with a schedule to ensure that at any one time, one of them was at home with the children and the other attending to Cindy. Second, they helped the children know as much as they could about MS and its effects on their big sister.
“Now they understand why she gets attention, and more importantly, we try to spend as much time together as a family whenever we can.”
This year, Cindy who is now 16 will be sitting for her KCSE exams. Her dream is to become a social worker and help the vulnerable in society.
Her parents are confident in her, their only worry is how to keep her from being stressed because of exams.
“Unfortunately, with our education system which emphasises on good grades. This puts undue pressure on the students. We are afraid that it could aggravate symptoms like fatigue,” asserts Alexander. BY DAILY NATION
Post a Comment