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A Milwaukee mother is raising awareness of a rare and deadly disease – in hopes of accelerating research.

The simple joys of childhood are dizzying – just ask 4-year-old Harlowe Isle. She suffers from infantile Batten disease. Currently, there is no cure.

“She’s definitely busy. But at the same time, it’s quiet,” her mother Erica Grabczyk said.

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Harlowe had her first seizure on Jan. 3, 2021, Grabczyk said. Months later, she was diagnosed with the condition, also known as CLN2.

“His brain cells aren’t cleaning themselves,” Grabczyk said.

Today, Harlowe is vibrant. However, doctors say that over time, her body will shut down. Life expectancy, says his mother, is between 7 and 12 years.

“Loss of mobility within a year and a half, usually in a wheelchair,” Grabczyk said. “You go blind and really lose all your functions. The ability to be able to swallow, eat, do all things.”

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Every two weeks, the family travels to Madison for treatment to slow the degeneration.

“It doesn’t cure anything. It just gives you a few extra years of functioning at higher capacity,” Grabczyk said.

The rare disease doesn’t get much attention. Grabczyk is an advocate for awareness, funding and research. She hopes the US Food and Drug Administration will soon approve a pending human clinical trial for gene therapy.

“It would be wonderful, because at the moment there is nothing. You slowly watch your child die before your eyes. It’s terrible,” Grabczyk said. “It’s so hard to understand.”

She watches an illness steal her daughter’s future, but Grabczyk said that won’t stop her from trying to make others’ futures a little better.

Grabczyk said these treatments every two weeks cost about $64,000. It is partly covered by insurance. There is also a GoFundMe online fundraiser to help with future expenses.