GREENWOOD, Ind. – Nathan Milto’s battle against Late Infantile Batten disease has come to an end.
The young Greenwood man who was never expected to survive the rare disease past his 10th birthday died recently at the age of 24 due to complications from the affliction.
His funeral was Thursday at St. Barnabas Catholic Church.
In 1998, when Nathan was four, he was diagnosed with the disease that occurs as the body’s cells lose the ability to cleanse themselves.
First the boy’s eyesight failed followed by a diminishing ability to communicate as the disease finally left Nathan bedridden.
Nathan’s father Phil Milto soon learned that the disease, afflicting one in a million people, though related to Parkinson’s and ALS, was too rare to attract serious research and treatment funding.
Milto then went on an international crusade, raising the money for genetic research and treatment regiments that not only extended the life of Nathan but also his little brother P.J. and Batten patients around the world.
At the time of his death, Nathan was the world’s longest surviving Batten patient and P.J. has just turned 21.
Despite the debilitating effects of the mind and body wasting disease, both young men retained the ability to recognize familiar voices and respond when friends and family entered their home.
Physical therapists exercised the brothers on a daily basis.
Their battle galvanized the south side community which responded to several fundraisers to help the Miltos raise the money which went to a foundation dedicated to solving the Batten mystery.
The disease affects only the children of parents with a rare combination of genetic abnormalities.
Tricia and Phil Milto have two other sons who do not have the disorder.