National Clothesline

“He started having difficulty with his vision,” Phil noted. “I noticed a lot by throwing pitches to him. I used to throw baseballs to him and he could hit pitches at two-, three-years old. He was really good. Then, he just stopped watching the ball and started watching my hand. He never complained or said

anything about it.”

It soon became apparent that Nathan was no longer developing at the rate of other children his age. Both parents feared the worst, but neither wanted to admit it out loud.

The Miltos looked to doctors for answers, but it took over nine months to find out anything concrete. In June of 1999, it was confirmed that Nathan suffered from Late Infantile Batten’s disease, an extremely rare disorder in children where a genetic anomaly yields a lack of production in enzymes that eliminate cellular waste.

Unfortunately, when a human body continues to store such toxic material, it inevitably leads to an impairment of many physical and mental functions such as eyesight, motor skills and the ability to walk. Because there is no treatment for the fatal disease, most Batten’s children never live long enough to become teenagers.

Yet, when Phil was told that his son’s situation was hopeless, he refused to believe it.

“Normally, when a doctor tells you —†like we were told — just go home and make the best of the time that you have left because your son is going to die and there’s nothing you can do, people take that advice and do nothing. I didn’t want to take that advice and I made a promise to my son that I would do everything in my power to help him. As a father, that’s what I’m supposed to do.”

Watching his father start a drycleaning business with no previous cleaning experience, Phil learned that the key to survival — in business or in life —†is to never give up.

“My father didn’t have any experience. He was an entrepreneur, basically, and thought that drycleaning was a good business to go into,” Phil explained. “He went in head first. He was 40 years old and had five kids. Through hard work, he grew his business and made a success out of it.”

Growing up around the family plant, Phil did everything from picking up trash to pressing and spotting. After high school, he attended Indiana University’s business school where he double majored in Decision Science and Operations Management before he got a job as a management consultant for Price Waterhouse. He worked there for the next seven years. During that time, Phil married Tricia, his high school sweetheart, and the couple had their first child, Nathan, which made it more and more difficult for Phil to be away from home so often.

“At that time I was traveling quite a bit,” he recalled. “Anytime Nathan saw a telephone or luggage, he used to call it ‘daddy.’ That’s when I knew I needed to make a change.”

So, in 1995, Phil and his brother Tony bought Milto Cleaners. Since then, the siblings have grown the business by adhering to a simple plan.

“We strive to do everything possible to service the customer. and provide the best quality and value possible,” Phil explained. “My name is on every bag and I want to make sure my customers are happy.”

When it comes to maintaining the business, Phil subsribes to a proactive approach.

“There’s always a problem every day. We call them opportunities here at Milto Cleaners,” he said. “It does no one good to cry or pout about something without trying to take the initiative to change it.”

The ultimate business goal for the Milto siblings was to be able to spend more time at home — which, for Phil and Tricia, now included two more sons, Nicholas and P.J., or Phil, Jr. The brothers put policies in place that would allow the cleaners to run smoothly when they weren’t around.

In retrospect, the plan ended up being a smart idea. Once Nathan was diagnosed with Batten’s, time became absolutely critical for Phil, who never wasted a second. The first step in battling the disease was to find out more about it. He committed countless hours to educating himself on the science of it.

The rareness of the disorder made the learning process quite frustrating. Batten’s only occurs in about three of every 100,000 births in the United States, so there was little information to be found. Still, Phil managed to scrape together a few qualified researchers to invite to a summit meeting in June of 1999.

“I put together a workshop in Washington, DC, where I flew in all of the leading people who were working on this disease or similar diseases,” he said. “To be honest, there’s a handful — five, six people working on this disease in the country. I looked at other people who were doing similar things or different things that could potentially benefit our disease, and from that workshop spawned the idea that gene therapy could help our kid. A young, naive drycleaning dad raised his hand and just said, ‘Will that work for us?’ Basically, everyone said it should.”

The idea worked on paper, but it would take a monumental effort to become reality. Creating a cure is a complicated endeavor. Roadblocks like politics, fundraising, awareness and even science itself stand in the way.

Fortunately, Phil and his wife were perfectly suited for circumventing such obstacles. Phil even wonders if his family was singled out by fate. “As we look back at it, maybe this happened for a reason because we have some background that enables us to have some success,” he said.

Phil and Tricia already possessed ample experience in bringing people together for a common cause. He had managed grand scale multi-million dollar projects for Price Waterhouse and she had performed fundraising and promotions for Gatorade.

Leveraging every resource at their disposal, the Miltos developed the Nathan’s Battle Foundation to precipitate the discovery of a cure. Good news followed when the organization initiated a formal project with Cornell University's Weill Medical College to develop a life-saving treatment.

Unfortunately, the newfound hope turned out to be bittersweet for the Miltos when their heartbreak doubled: their youngest son, P.J., was diagnosed with Batten’s at that time.

Instead of crushing the family, the unbearable news only fueled them to work harder to raise the millions of dollars necessary to fund the Cornell research effort. As the Foundation engineered every type of fundraising event imaginable, Phil used his business savvy to kick-start the process.

“Research normally has to have the money committed up front before they’ll begin,” Phil said. “I pitched to Cornell that we pay them on a monthly schedule just like a loan. They agreed to it. I had to pay them $100,000 a month. Basically, we were just trying to make our monthly payment.”

In almost four years time, the Foundation has raised $3.7 million and has given virtually all of it to Cornell so that the university could work on the manufacturing of a gene therapy drug meant to halt the progression of Batten’s.

It took over two years, but Cornell succeeded in manufacturing a clinical grade quality drug that has met with initial F.D.A. approval after being tested on 45 primates and hundreds of rats and mice. According to Phil, the drug has also satisfied additional criteria defined by the F.D.A. and it could be approved for a clinical trial on humans by January of 2004... provided one more obstacle is overcome.

“Right now, our big hurdle is money,” Phil noted. “The trial will happen. The data is good, but it costs another $2.5 million to initiate the trial. My immediate goal is to raise the first year’s funds — about $900,000 worth. We need to raise the money to make sure the trial is not delayed because we’re battling time.”

Time already has been very unkind to the Milto boys. Nathan, now nine, has been blind for three years and has lost most of his vocabulary. He is bedridden, as well, and had a feeding tube installed two years ago.

P.J., who is six, has retained some of his vision, but he had his own feeding tube installed earlier this year. He can still say a few words, but now he has difficulty moving around.

“The disease is devastating and has robbed the children of a lot of their abilities, but they both remain in very good spirits,” Phil said. “They’re both happy and we draw our strengths from them. They really are very special kids.”

Courage alone may not be enough for the Milto boys to survive. Even if the Foundation raises enough money to start the clinical trial, it is uncertain whether Nathan or P.J. will even be included in the testing.

“There never was a guarantee that my children would be in the trial. If they meet the requirements and the conditions, then there is no reason why they shouldn’t,” Phil explained. “But the goal is to make sure than no one else has to go through what we’ve gone through, and to cure this disease. We’ve been through some difficult times, but we always are very hopeful and optimistic about the future. We used to think what could have been and now we think about what will be.”