Wednesday, 28 August 2013

IRGM SPECIAL FEATURE: JOVITA SIX YEAR OLD KENYAN SINGER WITH ONE KIDNEY

Just one kidney and Jovita will be your next Juliana Kanyomozi


Little Jovita Kintu suddenly woke up, rustled from sleep by a crying mother somewhere in Ward 2C at Mulago Hospital. She sat up on her sickbed, her head foggy from the deep slumber, trying to get her bearings right. In one corner of the children’s ward, some sort of stampede was going on.

Then, fully awake, little Jovita saw it. Yes, a stretcher being wheeled out, and on it the two lifeless bodies of the twins that had become her play buddies in hospital – both of whom had been battling a debilitating kidney condition, one akin to that eating at Jovita herself.
From the many sad mothers hovering by the stretcher, all drenched in tears and others sitting crestfallen by their patients back in the children’s ward, Jovita knew it.
Her playmates, who had become her pillar of strength, had finally lost their battle. Now Jovita would fight solo to try and beat hers – an oversized kidney and all its ensuing illnesses.
“Mummy; am I going to die too?” she asked her mother, Sheila Birabwa. Not knowing what to tell her ailing girl, Birabwa just couldn’t hold back her tears, even though she had been trying so hard not to show the four year-old a single sign of desperation. 
This incident, Birabwa says, happened two years ago, and has since been etched on her mind, reminding her that Jovita, now six years old, could die any time today. Any time because her scheduled appointment to see Dr. Richard Trompeter, a consultant paediatric nephrologist in London, UK, has been long overdue. Four years overdue, to be exact. 
Not that she chose to skip the appointment, which was to happen on April 27, 2009. Rather, Jovita’s poor parents couldn’t afford this trip to go and buy their girl a lease of life in form of a kidney transplant.
Yet, her left Kidney continues growing bigger by the day, causing the girl all sorts of complications in its wake, keeping her and her mother in and out of hospital.
That has been the trend for all of her six years of age. Now the mention of the word hospital unsettles her, for she has had her share of injections, drips, perennial tablets, and deaths too.
We first discovered Jovita in May, when as an aspiring singer, she hit the finale of the 2013 Superstar Kid Talent Search, held at Silver Springs in Bugoloobi.
Looking immaculate in white, jolly and with long flowing hair, the beautiful P.1 thing from Little Muheji School in Nansana mesmerized all and sundry with her grasp of Juliana Kanyomozi’s gospel hit, Kanyimbe.
Word for word, she had her lyrics right. Her singing voice too was amazing. She did the song so well; and told the judges she aspires to sing like Juliana, her inspiration, as well as become a paediatrician so she can treat ailing children.
 
Jovita then sang another song titled Hear the Cry. An own song written for her by her older sister Jovia Kintu, who washed it out of a discarded and unrecorded song by renowned child star Little Tammy, Jovita’s singing broke the hearts of many in attendance. It was as if the lyrics had been inspired by her story. “Hear the cry of the African child… crying for help, always crying,” she sang.
“Have mercy on me, I beg…don’t do it to me, please don’t do it to me…I am more than your child, I am more than your sister… don’t do it to me, I beg.
Children are crying, children are suffering…they are looking for help, they are looking for hope, they are looking for shelter…So hear the cry of the African child,” concluded her song in what got the audience quiet, pondering her lyrics. 
But towards the end of the song, the little girl was panting, gasping for air as though she was running a marathon. Little did we know that with her condition, she could only go so far.
It was about this point that Joseph Masembe, the runner of the talent search, rescued her from the microphone, telling the audience that she was tired and needed a rest because of her kidney condition.
And that this condition made her struggle throughout the competition right from the preliminary stages, just that she was good with her singing, and exhibited a rare trait of not giving up regardless of her condition.
“In fact, Jovita didn’t at any stage in the competition try to win any sympathy votes because of her condition, or even show she had the condition at all,” said Masembe.
Though Masembe went ahead and gave out Jovita’s mother’s contact details hoping the many well-heeled parents in attendance would come to her rescue, the little girl hasn’t struck any luck so far.
Her story? Well, Jovita doesn’t have much of a normal life to talk of since birth. In a February 19, 2009 referral letter to Great Ormond Street Hospital, London, Dr. John Barugahare of Mulago Hospital writes that immediately Jovita was born on January 29, 2007 at Mulago, “she was referred to the Special Care Unit due to difficulty in breathing and failure to breastfeed.”
After managing her on oxygen therapy, intravenous fluids, vitamin K and antibiotics, she was diagnosed with birth asphyxia, which is basically suffocation, choking and the like, all as a result of severe deficient supply of oxygen to the body. The newborn’s first two months were spent in hospital, along the way presenting several other complications, including on and off constipation, passing dismal amounts of urine, fever, name it.
“Even after we got discharged following a bit of stability, you never actually sat content that she was fine. The girl would suddenly develop stomach aches, followed by vomiting, which sort of relieved her.
Then the next moment she would develop swellings, or spend about two weeks without urinating or passing stool, and if you gave her more fluids and fruits to induce the urine, a different complication showed up, ” says a confused Birabwa, her mother.
Jovita’s kidney condition was detected at 19 months of age after all sorts of complications had had their field day.

Doctor Evans Katusiime, a specialist radiologist at Mulago Hospital who did an abdominal scan on her, indicated that whereas her right kidney was normal, measuring 35X18cm as at February 10, 2009, “the left kidney was bigger, measuring 55x20cm”, and that it had a confined renal mass, which is a growth, usually a cyst or fluid-filled sac arising from the kidney. In his conclusion, Dr. Katusiime cited evidence of the girl’s abdominal organs being arranged in an abnormal way (situs inversus), and forced vomiting (pyloric stenosis).
Of course, this new trend of things meant entry by a whole new slew of medications, the type whose costs are astronomical. As a result, every penny of this family has since got spent on Jovita’s medication.
When the school fees sponsor of her sister Jovia lost her job, Jovia dropped out in S.2 at London College of St. Lawrence, as their mother, Birabwa, couldn’t afford the school fees. A primary school teacher by profession, Birabwa had a job teaching at Hope Kindergarten Centre in Nabweru. But because of constant absenteeism from work following her child’s unstable health, she lost her job, just like all her previous jobs.
Now all she does is sit home in Nansana and watch the girl. Jovita’s father, Frank Kintu, earns peanuts from his driver job, and can’t help his daughter.
Yet, the girl’s condition isn’t about to improve unless a kidney transplant is secured for her, the whole trip and medication costing sh70m. “She’s well one moment, and the next she’s gravely ill. When she’s fine and playing, I am happy, but also worried about what’s coming next. Even at school, they don’t allow her to play because they fear she will relapse, ” says Birabwa.
But Jovita isn’t your laid-back child, so she insists on playing. In fact, she also sings at her school Little Muheji’s assemblies every Friday.
Her dream is to sing as well as Juliana, the reason she has mastered most of her songs. As this interview is winding up, Jovita, who has all the while been recording herself off my phone a short distance from us, suddenly runs towards us and asks if I will introduce her to Juliana Kanyomozi, or Buganda Princess Katrina Ssangalyambogo.
“So why do you want to meet them?” I ask her. “Because I love Katrina, she is so nice, and I also want to ask Juliana to help me record a song so that I can have a concert and raise money for my treatment,” she coos.
I don’t know what to say to her, for it’s hard to make promises when it comes to celebs. But I promise her that maybe they will read this article and ask to see her. Maybe you should be this girl’s Juliana this year. Here is your chance to make a difference. Any amount counts! 
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