New parents Gordon and Kristen Gray were overjoyed by every coo, every smile, and every milestone reached by their cheerful young daughter, Charlotte.
When Charlotte was around 3 years old, however, her parents began to notice her speech and fine motor development were not progressing as quickly as they were before. She was no longer able to keep up with her peers at school. Thorough testing revealed that Charlotte had a very rare, neurodegenerative disorder called Batten disease. The couple was devastated when a doctor explained that Charlotte would become blind, immobile and progressively impaired cognitively, and likely would be dead before the age of 13.
Since the disease is inherited, the couple was told their younger daughter, Gwenyth, had a one-in-four chance of having Batten, as well. They immediately had her tested and were crushed to learn that she, too, shared the incurable diagnosis.
Dr. Jill Weimer, associate director and scientist at the Children's Health Research Center, explains that Batten disease affects approximately one in 100,000 individuals worldwide. The rare, fatal disorder causes progressive damage to the cells of the nervous system, resulting in vision loss, seizures, and loss of motor functions.
There is no cure for Batten disease. Researchers currently are working to understand the underlying causes of genetic diseases, such as Batten, and are searching for cures.
Learn how you can help:
To learn more about Batten disease and to donate to the Charlotte and Gwenyth Gray Foundation, please visit CureBatten.org.