Family celebrates milestone birthday for son with rare disease
GREENWOOD, Ind. (WISH) — A very special birthday for an Indiana boy whose family made national headlines in the fight against an extremely rare disease is Monday.
24-Hour News 8 first shared the story of the Milto family from Greenwood 15 years ago. In 2000, doctors diagnosed Nathan and PJ Milto with a neurological disorder that only affects about 500 people. It’s called “Batten disease.”
Doctors said the boys would only live another eight to 10 years, but on Monday Nathan turns 21. PJ turns 18 in August.
The family tells us both boys are bedridden and blind – but can communicate and smile.
According to the Batten Disease Support and Research Association, the disease can happen in children and adults that have inherited a genetic material from their parents. The disease can take years to affect their everyday life and can come on quickly without warning.
The disease is one of around 50 diseases called lysosomal storage disorders, which causes a genetic mutation disruption. For the Batten disease, cells are thrown out of balance and cause a build-up of proteins and lipids, according to the Batten disease association. For more information about Batten disease, click here.
Over the years the Miltos have created a foundation and raised millions of dollars to fund a clinical trial for a potential cure for Batten disease.