Childhood dementia is a tragic and often overlooked disease, commonly associated with old age but affecting a surprising number of children. This group of genetic disorders impairs memory, motor skills, speech, and the ability to recognize loved ones. For parents and families, watching a child’s faculties deteriorate is heartbreaking.
Niki Markou, mother of Angelina, experienced the shock of her daughter’s diagnosis at just 14 years old. Angelina was showing symptoms of Lafora disease, a rare neurological condition. Markou describes the devastating impact the disease has had on her daughter’s hopes and dreams, as it robbed her not only of her abilities but also of a normal teenage life.
The challenge in understanding and treating childhood dementia lies in the variety of 145 different genetic disorders that contribute to the disease. While each disorder individually is rare, collectively they are significant. The lack of awareness and resources for childhood dementia is evident in the limited health resources and structures available for affected children.
However, a recent study led by University of Adelaide pediatric neurologist Nicholas Smith aims to bridge this knowledge gap. The study, analyzing global published data, found that over 100 babies born in Australia each year will develop childhood dementia, with 91 deaths resulting from the disease. Despite this significant impact, the support and resources available for childhood dementia are drastically insufficient.
Parents like Niki Markou struggle to explain their child’s condition to medical professionals and obtain necessary support. Markou expresses the difficulty in accessing appropriate care and services for her daughter. However, the recent establishment of the Adolescent and Young Adult Hospice in Sydney’s northern beaches has provided some relief for families, offering specialized care for young people with life-limiting illnesses.
Increased awareness and funding for childhood dementia could lead to improved resources, support, and more youth hospices to cater to the unique needs of affected children. While childhood dementia may be less common than its geriatric counterpart, the devastating impact it has on young lives cannot be underestimated.
Sources:
– Article: Anonymous
– Image: AAP
– Study: University of Adelaide
