Dedicated dads made the difference in the lives of Ryan Sparks and Lorenzo Odone.
Ryan Sparks, second son of best selling author Nicholas Sparks, spent a year going from one medical clinic to another as his parents sought to understand why he did not speak. Each time a different diagnosis labeled him inadequately as deaf, autistic or learning disabled. With each diagnosis, Nicholas Sparks found and read as many books as he could find about his son’s current diagnostic condition. He researched symptoms and the treatments suggested for an optimum outcome.
In his autobiography “Three Weeks With My Brother” Nicholas Sparks writes the best fit for Ryan’s symptoms settled into an illusive “dyslexia of hearing.” Ryan experienced difficulty processing sounds, especially speech. By the year’s end, he and his wife, Cathy, did not so much want a diagnosis as they wanted an end to their son’s world of silence. One evening, filled with fearful frustration, Cathy told Nicholas that she sat up nights afraid that Ryan would never participate in the activities of a normal life, never speak, never have a friend.
Sending his wife on a much needed a break from everything, Nicholas stayed home with the children and set up a learning center for Ryan based on his year of research of various therapies. For a week he focused on Ryan. The first day he spent eight hours saying, “Apple” to Ryan, showing him the picture and rewarding him with tidbits for any effort to repeat the word.
After two hours Ryan screamed and kicked, after four hours he said, “ap” after eight he could say, “Apple.” Nicholas knew his son did not understand the word, but he had said it.
The next day Nicholas worked on “I love you” until Ryan could say “I wuv you” on the phone to his mom that evening. From that week on Sparks wrote, “I … started working with my son Ryan, trying to ‘re- wire’ his brain, so to speak, through intensive therapy. I spent three to four hours a day teaching him the mechanics of speech in the hopes of aiding his development and getting him to talk. It was just about the hardest and yet most rewarding thing I’ve ever done.”
Ryan’s parents sent him off to school with bated breath, unsure if the home therapy had been enough. It was. Ryan’s teachers never asked for a conference to discuss his learning disabilities. He fit in with the rest of his class and developed his own group of friends.
The Odone’s never had a any hope for a happily ever after outcome for their son’s disorder — adrenoleukodystrophy — a rare, genetic disorder found in boys that leads to progressive brain damage, failure of the adrenal glands and inevitably death. Typically, death comes within a couple years after diagnosis, most died by the age of 10.
Augusto Odone and his wife Michaela lived in the Washington D.C. area. With a personal urgency to stop the cascade of symptoms, they took turns spending hundreds of hours in the National Library researching even the most obscure references to Lorenzo’s illness or its symptoms. They invested their own money searching for a treatment, talked with experts from around the world and badgered the doctors to consider a new protocol on their son when they found an idea that might slow and stop the inevitable march to the grave.
When they found complex oils that might slow or stop the degeneration, the Odones called related industries around the world searching someone to manufacture the derivatives of the oils needed. The first one oil proved effective for a while. The second stopped his decline.
He did not die in a couple years. He re-gained enough of his lost facilities to communicate to his parents that inside his severely disabled body he could hear and understand.
Because of Augusto Odone’s persistence and work with the doctors, scientists increased their understanding of the illness and refocused their search for a potential treatment.
Odone’s persistence helped the doctors develop a protocol that retarded the physical decline in thousands of boys around the world. Lorenzo lived one day past his 30th birthday, thanks to his father’s dedication.
Some people sit around and complain about the bad hand life has dealt them. Some have a laundry list of excuses why they can’t do anything to change their circumstances. Others get busy, study the situation, learn everything possible about the problem and work to change what they can.
Some of those people are dedicated dads who will do anything humanly possible to make a difference in their children’s lives.