Southsider Voice correspondent
Lifelong Southsiders Phil and Tricia Milto know the power of hope.
“Hope is powerful,” Phil Milto said. “It’s a wonderful feeling to have hope and to be able to give hope, too.”
The Miltos know too well about hope as well as the power of prayer, the ongoing support of the Southside and the results of old-fashioned determination.
Sixteen years ago they were devastated when informed by doctors that the demise in sight, motor skills and cognitive abilities of their 4-year-old son, Nathan, was due to incurable late infantile Batten disease. Doctors told them there was no hope for Nathan and to go home and treasure the few years that their son had left. His life expectancy then was 12 years.
“I just didn’t want to accept what the doctors said,” remarked Phil, “that there wasn’t anything else to be done. I wasn’t going to take ‘no’ for an answer.”
Because the Miltos believed in hope and prayer in their darkest hours, Nathan’s Battle Foundation was established. Today, the dreaded disease can be stabilized and not worsen. P.J., the couple’s third son, was diagnosed with the same ailment in March 2001.
Nathan, 20, and P.J., 16, are among 20 children who have been treated successfully for Batten disease with gene therapy through Cornell University’s Weill Medical College. Nathan is the world’s longest living survivor of Batten’s disease, a milestone among many for the foundation and the Miltos.
“My role as a father is to make my children’s lives better,” Phil said. “In the beginning I was trying to get my arms around everything; what would it take? I didn’t imagine it would become as involved.”
The Miltos also have two sons not afflicted with the ailment: Nick, who graduated from Roncalli in May and will play hockey at Ball State, and Joey, 10.
“Tricia is a saint; she is one of the strongest women you will ever meet,” Phil said. “She is the cornerstone of making all this possible. She had to deal with everything from the beginning, those hard days with really no outside help. She gets very little credit and deserves all the credit.”
Phil owns and operates Milto Cleaners, a business that his father started in 1970. He has six retail locations, five home delivery routes and a fire restoration division.
Phil and Tricia began raising funds for Nathan’s Battle 14 years ago..
Phil went everywhere: women’s teas, a massive communitywide plea at Perry Meridian High School, motorcycle benefit rides, garage sales, black-tie dinners and prime-time national TV coverage. He also traveled nationally and internationally and spoke to doctors, researchers, medical students and potential patrons for gene therapy development.
The foundation eventually entered into an historical agreement with Cornell on a business model that was innovative and sustainable. The first clinical trials on children began in 2004; the result was no further degeneration of disease symptoms.
“What was thought untreatable is now being treated with this therapy that is saving lives,” Phil said.
A second-generation advanced drug has been developed for a second clinical trial that can benefit even more children afflicted with the disease. The need for funding continues as researchers try to move from stopping the disease’s progression to hopefully reversing some symptoms.
Phil, who stands out as an international spokesman for gene therapy development, is contacted by parents with children afflicted by the disease. He continues to speak with board members of corporations, various biotech companies and academic institutions.
“Dealing with emails and providing other families with advice can be very challenging,” Phil said. “It’s a responsibility that I don’t take lightly; to help people in their journey and to change their journey. When we started there was no hope, no therapy.”
Today there is hope for others all because a father and mother wanted to do everything humanly possible for their sons.