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Parents Fund Therapy to Treat Daughters’ Brain Disorder: ‘We Were Told to Watch Them Die’

TRISH ALISON PHOTOGRAPHY

TRISH ALISON PHOTOGRAPHY

It’s every parent’s worst nightmare when their children are diagnosed with a fatal disease. Sadly, this is the real life of the producer of “The Rookie Gordon Gray and his wife Kristen–whose two young daughters were diagnosed with a rare and deadly brain disease in March 2015.

It seems there is a light at the end of the tunnel, however, with a potential new treatment for Batten disease, which currently has no cure. A year after her diagnosis, the couple’s 5-year-old daughter Charlotte became the first patient in the world to enroll in a clinical trial for an experimental therapy. The disorder affects Charlotte and her 2-year-old sister, Gwenyth. The disorder causes blindness, seizures, loss of communication and motor skills, and dementia.

Their doctors apparently told the Grays there was nothing that could be done to save their daughters, Gordon stated in PEOPLE:

“One of the doctors we spoke with said, ‘I would recommend that you live in a single-story house and prepare for wheelchairs and blindness.’ 

We were told to just take them home and watch them die. That was something that we just couldn’t do.”

As a result, the couple launched the Charlotte and Gwenyth Gray Foundation to Cure Batten Disease, which included help from celebrities like Rihanna and Gwyneth Paltrow, with a goal of raising $10 million. A year later, the foundation has raised around $3.5 million to fund research for a cure. As of now, there is a clinical trial for an investigative gene therapy at Nationwide Children’s Hospital.

In March, Charlotte underwent the one-time procedure, although it’s still too early to determine if the procedure was a success. Her parents believe it has been, as Charlotte has been able to “reconnect with her language skills,” after having trouble walking and talking.

Regardless of how their daughters respond to the treatment, Gordon is dedicated to the cause, as he wants to find a cure so no other child has to suffer because of the disease:

“We want to continue to help other kids with Batten. We ‘re looking to raise one million dollars to honor the commitment that we made to help every child that is available for the clinical trial.”

I sincerely hope the trials go well, because if it does, it means lives around the world will be saved.


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