A mother’s fight against childhood dementia
Rare disorder
A mother shares her fight with childhood dementia after her son was diagnosed with this rare condition.
Rina Geldenhuys always knew something was wrong with her son, Riko. From birth, she had an uneasy feeling that others dismissed. But her instincts proved right when, at just two years old, Riko was diagnosed with frontotemporal dementia, a rare and devastating condition."I felt it, I saw it," Rina says from her home at Langstrand. "People told me I was looking for something that wasn’t there, but I knew something was wrong."
After months of hospital visits and tests, Rina found a doctor who took her concerns seriously. In March last year, Riko was diagnosed with childhood dementia.
The condition, typically associated with the elderly, gradually destroys brain function, taking away a child’s ability to talk, walk, and even recognize loved ones.
"At first, I didn’t fully understand what it meant," she says. "But once I started researching, reality hit me hard. I knew what the end would be."
Riko's condition remains unpredictable. "Every day, there is something new," Rina explains. "He takes steps forward, then suddenly goes backward. He was off nappies, then back in them. Off the bottle, then back on it. One day he walks, the next he falls."
At just three years old, Riko has lost much mobility and speech. His vocabulary is limited to about ten words.
"He tries to do what his sister does, but even if he can’t, he still tries," Rina says. "Some days, he has energy. Other days, he just lies there, too weak to move."
Communication is a major challenge.
Frustrations
"He gets frustrated because he can’t say what he feels or where he’s in pain," Rina explains. "To others, he might seem like a difficult child, but crying is the only way he can sometimes express himself."
School is not an option. They tried taking him to a school, but “people don’t understand childhood dementia. They see a child who is different, and they don’t know how to accommodate him. That’s hard to deal with,” she said.
As Riko’s primary caregiver, Rina must always be ready. If he has an epileptic seizure, she needs to be there. “I can’t break down. He needs me to be strong. His sister needs me, too, but he needs me more. It’s a constant challenge to balance everything,” she admits.
Despite the difficulties, Riko has developed his own way to communicate. He has his own sign language and sounds. He makes gestures to show what he wants.
Childhood dementia is little known and often misunderstood.
"At first, even my family didn’t understand," Rina says. "People tried to give advice without really knowing what was happening. But once they saw what we were going through, they became supportive."
Unkind
Public reactions, however, are not always kind. According to Rina, people stare, and some laugh at Riko. “I’ve had to confront people and tell them, ‘That’s his condition. If you want to laugh, do it somewhere else.’ The world is not educated about childhood dementia,” she says.
Berrie Holtzhausen, CEO of Alzheimer Dementia Namibia, highlights the difference between mental and brain health.
"Dementia is not just about forgetting things," he explains. "It’s the destruction of the physical brain. It affects every function – walking, talking, thinking, even recognizing family. It’s progressive, and there’s no cure."
Childhood dementia is caused by over 100 rare genetic disorders. Its symptoms resemble those of adult dementia, including confusion, memory loss, and speech difficulties. Unlike adults, however, children lose skills they had only recently gained. They forget how to walk, talk, and play.
"Research is extremely limited," Holtzhausen says. "Most children with dementia don’t live to see adulthood. Without funding, we can’t improve survival rates or quality of life."
Rina urges parents to trust their instincts. "If you suspect something is wrong, push for tests. A CT scan takes minutes, but it can give you answers. Don’t ignore the signs,” she advises.
Rina just wants Riko to have the strength to keep fighting. “We will fight with him. I don’t want him to suffer. That’s all I hope for."
She calls on the public to educate themselves about childhood dementia. "It’s real. It’s not something made up. People need to understand so they can show kindness instead of judgment."