Mother struggles to care for son with rare condition

By-Faith Lwiishi

Olivia Mupwedi (40) from Ongwediva has been facing the immense challenge of caring for her son, By-Faith Lwiishi (8), who was diagnosed with Landau-Kleffner syndrome two years ago.

Lwiishi, once a normal and active child, now suffers from a disorder of the nervous system, making him unable to walk, talk, eat or perform any other activities.

Mupwedi says her son used to attend school and play with other children, like any other child.

“He feeds through a tube and can only consume a formula milk prescribed by a doctor, which, unfortunately, can only be obtained from private pharmacies.

“There are times when I struggle to afford it,” she says.

Lwiishi also requires a gastrostomy tube for medication and liquid food, as he is no longer able to feed through his mouth or digest solid food.

Mupwedi says she faces financial challenges, although she is sometimes assisted by church members.

Her daily routine revolves around caring for her son, including the regular replacement of the gastrostomy tube every four months.

Mupwedi says she feels overwhelmed when at home.

Despite her financial struggles, she says she adheres to the doctor’s prescriptions and still has hope for her son’s recovery.

“I continue trusting God for my son’s healing. There where times he collapsed and I didn’t know how to handle the situation. Now I am learning more about the condition.

“We have been in and out of hospitals. My son was admitted at Windhoek Central Hospital, Katutura Intermediate Hospital, and Oshakati Hospital in the past year,” Mupwedi says.

It is not easy, says the mother of three.

Kristine Nghilokwa (35), Mupwedi’s cousin, says: “She may appear strong, but one can tell she is struggling. She spends so much, and the job that she has cannot sustain her and all her children.”

Nghilokwa is urging the government to intervene and assist Lwiishi in accessing a private sector neurologist who can provide him with specialised treatment.

According to Windhoek-based doctor Adelinu Celestinu, Landau-Kleffner Syndrome (LKS) is a rare age-related epileptic encephalopathy that usually manifests in children aged between three and eight years with previously normal development.

Treatment can include medicine or surgery to help prevent seizures.

Speech therapy may help a child with this condition regain some language skills, Celestinu says.

LKS is a lifelong condition. Some children regain their ability to speak and understand language, while others may only partially recover language skills, he says.

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