2-year-old’s eyebrows were first sign of condition before devastating diagnosis

A two-year-old described as a “bundle of energy” has been diagnosed with a rare form of childhood dementia, and now her parents fear that “time is running out to save her life.”

Only one week before her second birthday, little Leni Forrester was diagnosed with Sanfilippo Syndrome Type B, a rapid neurodegenerative condition also known as childhood dementia.

Her parents, Emily, 33, and Gus, 35, said they were completely blindsided by the diagnosis: “We didn’t have any concerns at all about Leni,” the Kent mother told the Mirror, describing her daughter as “sunshine.”

‘Catastrophic genetic condition’

The first indication that something might be wrong came unexpectedly during a routine genetic screening connected to Emily’s sister, who was found to be a carrier for the NAGLU gene linked to the condition.

Although the chances of their child being affected were extremely small, the mom and dad chose to undergo testing as a precaution.

At first, a medical test gave them the “all-clear,” reassuring the couple and encouraging them to consider expanding their family.

But further testing revealed the tiny tot had Sanfilippo syndrome, a “catastrophic genetic condition.”