Ohio mother Emily Blackburn shares her deep heartbreak after her eight-year-old son, Grayson Naff, was diagnosed with Batten disease, a rare genetic condition that leads to childhood dementia. Batten disease affects approximately one in 25,000 babies and gradually causes the brain to deteriorate over a period of five to ten years.

Grayson's eyesight has already deteriorated to the extent that he is considered legally blind, making daily activities such as playing, reading, and writing difficult for him. As the disease progresses, afflicted individuals lose the ability to speak, move, see, and swallow, typically resulting in a life expectancy of only five years after symptoms appear.

Alongside the devastating diagnosis, Blackburn reveals the additional heartache that siblings of affected children have a one in four chance of developing the disease as well as a 50% chance of being carriers. The family is now faced with the challenges of managing Grayson's medical needs while also considering the potential risk to his younger brother, Beckett.

Grayson has already begun training with a white cane, a mobility tool for the visually impaired, to help navigate his environment. His mother expressed her anguish, stating that if no approved treatment or cure is found in the coming years, Grayson will lose every function he currently possesses, starting with full blindness.

Mallory Blackburn, Grayson's mother, reveals her own infertility struggle as she was born without a uterus, eliminating any possibility of conceiving a child naturally. She hopes to raise awareness about the emotional toll caused by infertility and the added complexities that arise when faced with a rare disease diagnosis.

Grayson's health issues first arose in late August 2022 when he began standing close to the TV to see it. His mother took him to an ophthalmologist who identified a problem in his retina and referred him to a specialist at the Cincinnati Eye Institute. Initially suspected to be Stargardt Disease, a rare genetic eye condition, further genetic testing revealed that Grayson, in fact, had Batten disease.

As a recessive disorder, Batten disease necessitates that a child must inherit two copies of the mutation, one from each parent, to manifest symptoms. With no known cure for the disease, Grayson's treatment currently involves taking Miglustat, a drug that could potentially alleviate or slow down the progression of symptoms. However, the drug is not yet FDA-approved for Batten disease, leaving the family responsible for the hefty cost of approximately $100 per pill or $9,000 per month if insurance does not cover it.

In an effort to adapt to his diminishing vision, Grayson has also commenced learning Braille, a tactile writing system that enables blind individuals to read by feeling patterns of raised dots.

As the Blackburn family navigates the challenges posed by Grayson's diagnosis, they remain hopeful for advances in treatment and a cure for Batten disease. Their story sheds light on the profound impact of rare diseases on families and underscores the need for increased support and resources in the medical community.