Milwaukee girl battling deadly disease, mother raising awareness
MILWAUKEE - A Milwaukee mother is raising awareness about a rare, deadly disease – hoping to accelerate research.
The simple joys of childhood are dizzying – just ask 4-year-old Harlowe Isle. She is batting infantile Batten disease. Right now, there is no cure.
"She’s definitely busy. But at the same time it’s calm," said mother Erica Grabczyk.
SIGN UP TODAY: Get daily headlines, breaking news emails from FOX6 News
Harlowe had her first seizure on Jan. 3, 2021, Grabczyk said. Months later, she was diagnosed with the disease, also known as CLN2.
"Her brain cells aren’t clearing themselves out," Grabczyk said.
Harlowe Isle
Today, Harlowe is vibrant. However, doctors say, in time, her body will shut down. The life expectancy, her mother says, is between 7 and 12 years.
"Loss of mobility within a year and a half, usually wheelchair-bound," said Grabczyk. "You go blind and lose all your functions really. The ability to be able to swallow, eat, do all the things."
FREE DOWNLOAD: Get breaking news alerts in the FOX6 News app for iOS or Android.
Every two weeks, the family travels to Madison for treatment to slow down the degeneration.
"It doesn’t cure anything. It just gives you an extra couple years of her functioning at a higher ability," Grabczyk said.
Harlowe Isle
The rare disease does not get a lot of attention. Grabczyk is an advocate for awareness, funding and research. She hopes the U.S. Food and Drug Administration will soon approve a pending human clinical trial for genetic therapy.
"That would be wonderful, because right now there is nothing. You just slowly watch your child die before your eyes. It’s terrible," said Grabczyk. "It is so hard to even fathom."
Harlowe Isle
She is watching a disease steal her daughter's future, but Grabczyk said that won't stop her from trying to make the futures of others a little brighter.
Grabczyk said those treatments every two weeks cost roughly $64,000. It is covered in part by insurance. There is also a GoFundMe online fundraiser to help with future expenses. An online petition was also started, asking the U.S. Food and Drug Administration to grant clinicl trials of gene therapy to Batten disease patients.