News agency, Cape Town, South Africa
Thursday June 20th 2019

Children wait three years to find cause of mysterious illness

Siphosethu and his sister Akhona came to Khayelitsha three years ago with their parents Nowelile and Ndobi Dotwana in an effort to get medical help for a mysterious illness which has caused them to lose the use of their legs.

Two disabled children living in Khayelitsha have been waiting three years for proper medical treatment after coming to Cape Town to seek the help of a specialist who might enable them to walk again.

Siphosethu, 18 and Akhona Dotwana 16, were born perfectly healthy in Ecofimvaba in the Eastern Cape but one day in 2005 Siphosethu began having difficulty walking, said their mother Nowelile Dotwana.

The next day Akhona started struggling, said Nowelile, and their unknown illness got steadily worse and they later developed epilepsy.

Today, both children are confined to wheelchairs and complain about pain in the lower body.

She said the children were taken to a clinic in Queenstown but nurses could not determine what was wrong. They were then transferred to Santia hospital in the town for further observation where doctors diagnosed it as a problem in the bone.

Another transferral to Cecilia Makhiwane hospital in East London followed where doctors disagreed with the Queenstown hospital’s diagnosis.

“They took a biopsy to run some tests, still they could not find what was wrong,” said Nowelile.

She said in 2009 the family was told by doctors at Santia hospital that there were good doctors in the Western Cape who might be able to help them and Siphosethu and Akhona were referred to Groote Schuur outpatients for specialist treatment.

The family moved to Cape Town and managed to get a one-roomed shack in TB informal settlement in Khayelitsha Site B where they have been living ever since.

However, although Siphosetu and Akhona receive treatment from Groote Schuur for their epilepsy, the family were told the specialist who might be able to diagnose the problem with their legs, was overseas, and has still not returned.

Neither Nowelile nor her husband Nobile are employed. They live on child support grants.

Wind blows through gaps in the walls and the roof leaks so badly that when it rains the family cover themselves with black bin bags.

The parents take it in turns to look after their children. When Nowelile goes to the hospital to get the prescription for their epilepsy treatment, their father Ndobi has to stay home to look after them.

“They relieve themselves in the house and I have to take it to the toilet because the toilets are far and the is no road for wheel chairs” said Ndobi.

Ndoni admitted that sometimes he cries when he sees his children in pain.

“By coming here I thought we were going to get a specialist like we were promised in East London but the doctors say the specialist we need to see is overseas and we still have to wait.

“I wish I can take the pain away from them.”

“It’s so hard for me and my husband. I can’t go out to find a job, I must be at home looking after my children.”

Community leader Unathi Mabengwane said he knew of the family’s suffering.

“One of the caregivers told me about this family. Sometimes I visited them to see if I can help. This is a very painful situation. The shack is leaking, the floor is covered with plastic bags. I wish they could get a house or a bigger shack because in our area, we get fires at any time and to them their shack is a prison because they can’t move.”

Groote Schuur communications officer Alaric Jacobs said he could not give out medical details without written permission from the family. — Nombulelo Damba

 

Tags: Alaric Jacobs, Cecilia Makhiwane hospital, Epilepsy, Groote Schuur Hospital, Khayelitsha, Santia hospital

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