Batten Disease: Parents Funded Daughters' Treatment For Degenerative Brain Disorder After Doctors Told Them To 'Take Them Home And Watch Them Die'

Two daughters of producer Gordon Gray and wife, Kristen, were diagnosed with Batten disease, a rare degenerative brain disorder without any known cure. When they brought their daughters to the doctor, they couldn't believe their ears when they were told to "take them home and watch them die."

People said that when Gordon Gray heard it, they couldn't just accept it. The heart of a father told him that there must be a way.

A year after their daughters' diagnosis in 2015, their 5-year-old daughter Charlotte became the first patient in the world to take part in a clinical trial for a breakthrough Batten disease therapy. The outcome of the therapy could mean saving the life of Charlotte and 2-year-old Gwenyth, along with the rest of the children in the world affected by Batten disease.

Celebrities Rally Behind The Cause

The realization of this breakthrough therapy was a concerted effort not only of Gordon Gray and wife, but thanks to the support they received from Hollywood celebrities as well. Some of the stars who have contributed to this noble effort include Anne Hathaway, Dwayne "The Rock" Johnson, Jennifer Garner, Gwyneth Paltrow and Rihanna, to name a few.

Charlotte and Gwenyth Gray Foundation to Cure Batten Disease

Gordon Gray and wife launched the Charlotte and Gwenyth Gray Foundation to Cure Batten Disease. The goal of the foundation was to raise the $10 million to find an effective treatment that will cure the degenerative disease affecting mostly innocent children.

According to NINDS, there has been no known treatment that can reverse Batten disease symptoms. It stated that drugs can help control or reduce symptoms but not exactly cure them.

Batten Disease Cause And Symptoms

Batten disease is caused by mutated gene, which affects the ability of the brain to dispose waste, building up waste materials in the brain causing the deadly effects. When this buildup occurs, patients experience blindness, cognitive impairment, loss of sight and motor skills, seizures, become bedridden and demented, and eventually die.

With the Charlotte and Gwenyth Gray Foundation to Cure Batten Disease at the helm of finding a cure for this degenerative brain disorder, hope is brought into the world. Children suffering from the disease may find some solace in the efforts that the foundation is now pouring into.