Gravely ill child gives parents sleepless nights

Aug 13, 2016

The family in partnership with Sickle Cell Network Uganda has organized a fundraising and Sickle Cell screening and awareness event at Hotel Africana on Saturday.

PIC:7-year-old Kacie Imran Buuza suffers from sickle cell Anaemia being fed by his mother Lynn Najjemba through a tube during the Sickle Cell disease awareness and save Kacie fundraising press conference at Hotel African on August 9,2016. Photos/ Mary Kansiime


Before going to bed, he hugged the mum, smiled and told her, good night.

The following day as she prepared to leave for work, she heard a loud cry in his room, rushing there, her 7-year old second born, Kacie Imran Buuza had fallen from his bed and was lying helpless on the floor.

Lynn Najjemba, his mother and former employee at Panos Eastern Africa, said sorry, carried him and asked if he wanted to eat, drink or pee.  

 acie mran with his mother ynn ajjemba and father akeem bdul uuza Kacie Imran with his mother, Lynn Najjemba and father, Hakeem Abdul Buuza

 


"He was not responding, he was just staring at me crying. His jaws had dropped and only saliva was dripping out of his mouth," said Najjemba.

"I watched my son wail in pain, but was stuck did not know what to do. I have never been confused and scared like that day," she says with tears in her eyes.

Najjemba rushed her son to International Hospital and was immediately put into Intensive Care Unit.
She further narrated that when the doctor came out of the ICU, she and the husband received more shocking news. He said "If your son gets a fifth stroke, it may turn out fatal, he may die.  This was more shocking and frustrating.  I cried," she again sobbed.

On that unfortunate day, May this year, Imran who suffers from Sickle Cell Anemia had got a stroke for the fourth time within a pace of one year.

 
Imran the former primary one pupil at Daffodils Academy in Kampala had previously got three strokes, but was still very active, outspoken and lively.

But the fourth one has left him speechless till now, his brain, speech and throat were affected. He does not speak, only cries or slaps the parents when he wants something and feeds through a tube.
The parents first found out he had the disease when he was only eight months old. He developed a swelling on his finger thumb, which was painless. They took him to the hospital and also tested, they were shocked that they were carriers of the gene.

"We thought we were a healthy couple, but we both carry the sickle cell gene. This was the first shocker of our lives. It is important couples test before getting married," she advises.

 
Hakeem Buuza Abdul, Imran's dad admits that taking care of a child with the condition is not only financially straining, but emotionally and physically exhausting.

 He says the mother resigned from her job, he has taken off one year from work to monitor and look for funds to take their son for treatment.

 "We have no lives of our own; we wake up in the middle of the night, touch his nose to see if he is still breathing," said Abdul.

The doctors have advised that he immediately undergoes a stem cell transplant procedure.
Dr. Deogratias Munube, Paediatrician Sickle Cell Clinic, Mulago Hospital said a bone marrow transplant is the only cure for sickle cell patients though it's very expensive and can only be effective if the donor does not carry the gene.

He said children with the condition usually suffer from severe anaemia, infections, and strokes and need constant blood transfusion which is not readily available.

"To prevent complications, new born screening, early diagnosis and treatment are crucial. We advise couples intending to marry to first test for the disease to avoid giving birth to sick children, "he said.  

There is hope for Imran to completely recover from this night mare; all he needs is your helping hand, financial support.

 He has a donor, his ten-year-old brother does not have sickle cell gene and is 100% a match to donate the bone marrow.

Initially, they needed US$100,000(sh350m) for the transparent abroad, but have so far raised $35,000 (sh118m), through social media campaign and are looking for $65,000(sh219m).

Statistics 

There are 7,000 children with the disease at the Sickle Cell Clinic; it registers 62-100 cases daily, of these, 10-15 are admitted, while 6.8% of children with the condition suffer from stroke in Uganda.

The family in partnership with Sickle Cell Network Uganda has organized a fundraising and Sickle Cell screening and awareness event at Hotel Africana on Saturday.

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