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Havana teen battles rare disease

2020-10-16  Staff Reporter

Havana teen battles rare disease

An unemployed mother from Havana informal settlement has shared a heart-rending story of having to care for her once jovial 17-year-old son who is now confined to his bed and unable to complete his education. 
Lineekela Haimbodi was once a spirited young boy, but his life has since changed, and likely forever, after a local diagnostic radiologist found in 2018 he has a history of brain and spinal injury. The medical report was done three years after Haimbodi was struck by a car while walking from school in 2015. This has left his 40-year-old mother Patricia Ndashaala distraught. 

The mother maintained her son had been leading a normal life up until the March 2015 accident which affected his mobility. However, the medical report noted Haimbodi’s brain imaging findings are most consistent with Van der Knaap disease. An online explanation says the disease is a rare autosomal recessive disorder. 

It is characterised by macrocephaly that either presents at birth or develops during infancy. 
Motor Vehicle Accident (MVA) Fund CEO Rosalia Martins-Hausiku told New Era that there is no trace that Haimbodi sustained head and spinal cord injuries in the crash. However, MVA Fund records show Haimbodi was involved in a car accident as a pedestrian and sustained a moderate frontal open laceration. 

“He consequently received appropriate treatment at the Katutura state hospital.  A computerised tomography (CT) scan of the brain was done and no abnormalities were detected,” stated Martins-Hausiku. 
She further said Haimbodi’s mother lodged a claim with the fund on 29 July 2015 and on assessment, Haimbodi was awarded an injury grant but since he is a minor, the benefit was paid to the Master of the High Court and will be paid out at the age of 21, as per Section 10 of the Child Care and Protection Act.  

In addition, Martins-Hausiku said the fund also awarded medical benefits to Haimbodi but ceased after they discovered that he is a known epileptic patient with pre-existing head injuries. “Medical records in the fund’s possession clearly show that the current medical condition of the said Lineekela Fessor Haimbodi may not be a direct consequence of the motor vehicle accident, in which he was involved on 4 March 2015.  The fund affirms that the claimant’s mother was aware that the claimant had pre-existing head injury and she was informed on why the fund ceased to assist,” said Martins-Hausiku.

Haimbodi, who is the oldest of four children, is now reliant on his unemployed mother to feed, bath and change his diapers. The mother who left her security officer job to care for the teenager also has an eight-month-old baby and 10-year-old twin boys to take care of. Haimbodi’s and his twin brothers lost their father in 2013. 
Ndashaala told New Era that her son will only receive his payout from the MVA Fund when he turns 21. Ndashaala said after the accident, Haimbodi got a walking frame. During 2019, fellow learners at Hage Geingob High School collected funds and donated a wheelchair to enable him to move with ease at school. Haimbodi was repeating grade 9 this year, but he has since dropped out of school as his condition has deteriorated.

“His (class) teacher dropped him at home in March this year stating that Lineekela had stopped communicating. The teacher said he should stay at home while we monitor him. Since then he never spoke again,” the mother said. 
Subsequently, Ndashaala took her son to the doctor who gave him additional medication to what he was already getting. Shortly after this, the mother said, her son could not feed himself any longer. She stated Haimbodi also could not swallow food, water or medicine. He was regurgitating whatever he took in and as a result he was admitted in hospital. After his release from hospital over two weeks ago, Ndashaala has been finding it difficult to care for Haimbodi who needs a nutritional supplement, Ensure, as prescribed by the nurses and she also needs to buy him adult diapers. Haimbodi and his twin brothers each receive a N$250 social grant from the government. But for Haimbodi alone, his mother, per month must at least spend N$520 on four tins of 400g of Ensure. 

“I asked the nurses to provide me with Ensure when Haimbodi was released from hospital but they told me they don’t give out any. I don’t have money to buy Ensure. I first gave him Oshitaka but it was too thick to pass through the feeding tube. I give him Oshikandela diluted with water. But my concern is after giving him Oshikandela he has not relieved himself,” noted the mother. 

Haimbodi’s teacher Simon Mungungu said his learner was referred to the school by the education ministry while in grade 8.  Regarding this year, the teacher said Haimbodi stopped talking and would just stare.  Mungungu stated it was unlike Haimbodi who would usually tell him about his siblings. Mungungu added Haimbodi also experienced a lot of seizures.  In addition, Mungungu said that Haimbodi also got tired fast after writing just a few words compared to writing a paragraph when he started school.  He would take about two days to write a page and thus relied on fellow learners to write his summaries, the teacher said.  

He added that the school with the assistance of the Life Skills teacher tried to get him a suitable school but it was not successful. In the meantime, the director of Side by Side Early Intervention Centre, Huipie van Wyk, responded to Haimbodi’s plight and donated tins of Ensure, and diapers. She also drew up a schedule for the mother when to give him his supplement and medication.

2020-10-16  Staff Reporter

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