Nathan & PJ's Story

Nathan is a sweet innocent little boy. He is our son and we love him dearly. When he was 4 years old, he was diagnosed with a fatal degenerative neurological disease called Late Infantile Batten disease. This disease takes no mercy on its young victims. Nathan is currently completely blind and has regressed in skills that he had once mastered. Every day he struggles. The child who once ran and played like other children now requires constant care. Nathan's future will consist of seizures, loss of motor control, as well as loss of the ability to think and reason coherently. Nathan will end up bedridden and will require a feeding tube for nourishment. The average life expectancy for a child with Late Infantile Batten's Disease is twelve years of age. It breaks our hearts to see this wonderful boy struggle so much. In appearance he looks very normal and others cannot understand why he struggles. At this point we are desperately searching for a treatment for his conditions. We are willing to do anything or go anywhere to help our son.

 Nathan & PJ's Story

We founded the Nathan's Battle Foundation to aid in the development of therapies for this deadly disease.  Through the foundations efforts we found a potential cure.  In late 2000, we initiated a formal project with Cornell University's Weill Medical College to develop this life saving treatment and initiate a clinical trial. 

On March 12, 2001, complete devastation overcomes the Milto family when test results from their youngest son, P.J., comeback positive for Late Infantile Batten disease. The Milto family is attempting to deal with the unbearable diagnosis of their youngest son. Nathan's Battle now becomes a WAR!!! We MUST win both the battle and the war. Two of our three children have this dreadful fatal disease.

The initial human clinical trial has completed! Both Nathan and PJ participated in the inital clinical trial. Since the first trial, Cornell has continued its work and has made tremendous progress improving the gene therapy drug based on all the data learned from the first trial. A second generation gene therapy drug has been developed and is being tested in Phase Ia/II human clinical trail. More funding is still needed to treat additional children with this potentially life-saving therapy. Your support makes a difference in the lives of these children and in the lives of the future generations of children with this disease.