Family Races Against Time as 5-Year-Old Daughter Battles Rare ‘Childhood Dementia‘
A North Carolina family is facing a heartbreaking reality after their daughter,Veda,was diagnosed with Sanfilippo Syndrome,a rare genetic disorder often called “childhood dementia.” The progressive condition, caused by enzyme deficiencies leading to a buildup of complex sugar molecules, is rapidly stripping away the 5-year-old’s abilities, reversing her progress and threatening a tragically short life.
Veda’s early development was normal; she walked before her first birthday and began to speak. However, around 14 months old, concerning symptoms emerged, including excessive thirst – consuming up to a gallon of water daily – and frequent respiratory and ear infections coupled with an insatiable appetite.
“she drank a gallon of water a day. We were worried she was diabetic,” her mother, Christine, recalled. Despite numerous tests, doctors were initially unable to pinpoint the cause. As Veda’s condition worsened, her speech regressed. “She went from trying to talk to stopping,” Christine said. “we thought she might have autism and started speech therapy.”
The family’s search for answers led them to a video of another child with similar symptoms on June 2, 2022. “My chest was tight and I was vrey shaken when I looked at the girl,” christine stated. After sharing the video with her husband, Jericho, 35, she described his reaction as turning “pale.”
Subsequent genetic testing confirmed the diagnosis of Sanfilippo Syndrome. the disorder affects both physical and neurological health. Currently, there is no approved treatment, and the family is now focused on raising awareness and funds for a clinical trial.
“I know my daughter is going to die at a very young age and I’m scared I won’t be able to keep her comfortable,” Christine shared, expressing her fear of the future.”I’m scared I can’t save her. It’s hard to get her to therapy to maintain her skills,and no matter how hard she works,one day all the skills she’s fought to maintain - she will lose.”
Sanfilippo Syndrome is a lysosomal storage disorder,impacting the body’s ability to break down long sugar molecules called glycosaminoglycans. This buildup damages cells, especially in the brain and nervous system, leading to progressive neurological decline. The syndrome affects an estimated 1 in 50,000 births.
