Childhood dementia, a condition often associated with old age, is surprisingly common among children. This devastating group of genetic disorders robs kids of their memory, ability to walk, talk, and recognize loved ones. For parents like Niki Markou, witnessing their child’s decline is heartbreaking. Her daughter Angelina was only 14 when she began showing symptoms of Lafora disease, a rare neurological condition that primarily affects teenagers.
The challenges faced by children with dementia go beyond the loss of abilities; it also robs them of their hopes, dreams, and any chance of leading a normal teenage life. Angelina, who aspired to a career in beauty and makeup, became frustrated when she could no longer fulfill these simple tasks. As the condition progresses, the suffering for both the child and their parents becomes unbearable.
Childhood dementia is caused by 145 individual genetic disorders, each individually rare. This makes it challenging for researchers and health planners to understand and treat the condition effectively. However, a recent study aims to bridge this knowledge gap, revealing that over 100 babies born in Australia each year will develop childhood dementia, with as many deaths as from childhood cancer.
One significant challenge faced by families dealing with childhood dementia is the lack of awareness and limited health resources and support structures for children. Pediatric neurologist, Nicholas Smith, emphasizes the importance of providing adequate support for children with dementia, stating that the existing support systems for adults should be equally available for children. Currently, even explaining the condition to medical professionals and accessing necessary support like the NDIS can be incredibly challenging for families.
In Australia, the first service for young people with life-limiting illness, the Adolescent and Young Adult Hospice, has recently opened. For Niki Markou, this has provided much-needed respite, allowing her to get a full night’s sleep for the first time in five years. She hopes that increased awareness of childhood dementia will lead to more funding and the establishment of more youth hospices.
Source: Australian Associated Press (AAP)