After local families and friends came together to raise funds for a family with a serious disease, hope is on the horizon. –
In 2015 Charlotte and Gwenyth Gray were diagnosed with Batten Disease, a rare but fatal neurodegenerative brain disease that causes cells to collect waste and die off due to a missing gene in their bodies.
Longtime Friend Casey McCormick has been with them through their struggles:
“When they started this journey it was incurable, there was no treatment, so it was devastating it was a death sentence for kids,” she said.
While Charlotte and Gwenyth now live in California, their mother Kristen Gray grew up in Naperville. She and her husband, Hollywood film producer Gordon Gray, founded the Charlotte and Gwenyth Gray Foundation to Cure Batten as a means to stop the debilitating disease.
“It starts with speech and then your mobility and you lose your eyesight, unable to walk, take care of yourself,” said McCormick.
But thanks to research and fundraising, hope is on the horizon.
Charlotte and Gwyneth Gray underwent gene therapy that replaced the gene they once were missing, potentially putting a stop to the progress of the disease.
“A lot of damage was done before they started the treatment with Charlotte, but as far as Gwen, they’re hoping they caught it before any degeneration so that she could potentially be the first person to have this disease and live a happy life,” said McCormick.
Charlotte and Gwenyth are still undergoing small and large molecule cell therapy to help regain their skills that have been lost. But their parents think any progress is a step in the right direction.
“When I talked to Kristin she was just saying that any forward movement in Batten Disease is forward movement for all of them. She knows how devastating this disease is, so anyone that can be helped is a success.
Charlotte and Gwenyth have a specific form of batten called CLN6, but the family is raising funds to find a cure for all types.
Naperville News 17’s Alyssa Bochenek reports.
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