GREENWOOD, Ind. (August 23, 2015) – When a doctor told Phil and Tricia Milto in 1998 that their oldest son Nathan had a rare condition called Batten Disease, and the chances were 25% that his little brother PJ would have it, too, and since the odds are that one in a million children have the right combination of parents to receive the Batten gene, Phil asked how long his boys would live.
Ten years, the Miltos were told.
Nathan Milto celebrated his 21st birthday this summer and PJ turns 18 on Tuesday.
The Milto boys from Greenwood have grown to be men and beaten the body-and-mind-wasting disease to a standstill in a way no one ever has.
"Nathan is the oldest living Batten patient in the world," said Phil, sitting in the same suburban living room where he first plotted Nathan's Battle when his little boy was four years old and gradually losing his eyesight. "And his brother PJ is right behind him so he's number two."
That the Milto lads have lived so long, and Nathan's Battle is leading the way not only in research versus Batten but other diseases such as ALS and Parkinsons, is due to a businessman-turned-Biotech-entrepreneur-dad who realized very few scientists understood what was slowly robbing his kids of their lives.
Milto periodically left his southside dry cleaning business to fend for itself as he traveled the world and sat down with medical professionals, researchers, venture capitalists and decision makers to determine what it would take to jumpstart universities and industry and government institutes to recognize a progressive killer of children and understand and attack its weak points.
Recently dozens of golfers turned out for the 15th Nathan's Battle Foundation Tournament at Dye's Walk Country Club to continue the campaign that began in a living room and church basement and soon spread to families struggling for hope on the other side of the globe.
"Nathan's leading the cause. He's kind of the champion of the cause around the world," said Milto. "We knew we had to do something about it and change the course of this disease and those two kids in that room are definitely the genesis and the champions of this disease."
With millions of dollars raised from his friends and the Greenwood community, Milto was able to convince Cornell University to tackle the groundbreaking research into gene therapy that halted the march of the disease, which destroys the ability the body's cells to cleanse themselves.
Anthony Milto, Nathan's younger cousin by two months, spent his summer vacation from the pre-med program at Wabash College working side-by-side with the researchers in New York City trying to unlock the secret to defeating Batten Disease.
"I got to see a lot of data from younger children that are just now starting treatment," said Anthony, "and it really puts everything in perspective.
"I remember definitely they were funny little kids," he said of his cousins. "It’s just amazing that they're still here.
"They led almost a new revolution in genetic medicine," said Anthony reflecting back on his work in the Cornell gene research laboratory. "It’s crazy what they've done and what they've been leaders of."
Everyday therapists help make the Milto boys comfortable and tend to their physical needs in twin beds in a back bedroom packed with medical devices and medicines.
They still light up when a familiar voice rings out.
Phil said his sons still react and smile and understand and recall the sounds of people they haven't seen or spoken with in years, unaware of the battle they're winning against an insidious killer that never before attacked two such brothers in arms.
For more information about the Milto brothers, check out their website here.