US Brothers Aged 6 And 2 Diagnosed With Rare Childhood Dementia

The parents are working hard to extend their sons’ lives for as long as possible.

Dementia is abnormal brain degeneration that leads to changes in a person’s ability to think, speak, and take part in normal daily activities. It mostly affects older adults, and it’s quite rare for children and teenagers to have the syndrome. However, two young boys aged 6 and 2 in the US were diagnosed with childhood dementia as a result of a rare genetic disease, the New York Post reported.

Brothers Michael, aged 6, and Oliver, aged 2 both living in Washington were diagnosed with ‘Type 2 Battens’ disease in April and May, respectively. Batten disease, also called Neuronal Ceroid Lipofuscinoses (NCLs), is a paediatric neurodegenerative disorder caused by an abnormality in a child’s genes.

”How do you explain to a child that they have limited time? We’re putting it off for as long as possible,” their mother Kristian Tucker said.

Mrs. Tucker told Newsweek that Michael’s seizures began at age 3 and “continued to get worse as he got older.” When medications didn’t work, a genetic test revealed that Michael had dementia. 

”After the genetic test, we were told that Michael has Batten disease type 2 in April 2023. We had never heard of it before, but I was horrified. When we first found out about it, we were told the average life span is about eight to 12 years. I couldn’t believe that I might only have a couple of years left with my baby and that he would suffer so much,” she said.

The woman further discovered that she and her husband were both carriers of type 2 Battens, and had passed their genes along to Michael, and their youngest child Oliver as well. Though their middle child, a 4-year-old daughter, does not have the disease, she is also a carrier.

Battens reportedly affects one out of every 100,000 children globally. Its symptoms invlude seizures, loss of speech, motor skills, sight, and childhood dementia, ultimately resulting in death. 

Though heartbroken, the parents are working to extend their sons’ lives for as long as possible.

”I felt broken. These are my baby boys, the sweetest, happiest little boys. I still don’t understand how they can have this disease. It has devastated us all, but we are trying to make sure the boys have the best life we can give them by filling their little lives with experiences and family,” their mother said.