It is with great sadness that we said goodbye to a very special man on September 26, 2007. For anyone who ever crossed paths with Mr. Bobby Toby Sr., you would agree that Bobby Toby had a gift.
His gift was to make other people feel like they were someone special. Bobby put others in good spirits on their worst days just by being himself. Despite all of Bobby's own challenges and hardships, he would want to know how you were doing and what he could do for you. He didn't spend much time talking about how he was doing or what he needed. Bobby never complained or felt sorry for himself. He always had a smile on his face.
There was only one thing in Bobby's life that was more important than his children, Angie, Summer and Hank, and that was his only grandchild, Cameron. Cameron was blessed to have been able to spend the first two and a half years of his life with his "Papa". Cameron was Bobby's heart.
Bobby Toby was also not just a father to his own children, but he was a father figure to most of the kids in the whole town. Kids from teenagers to adults looked to him for advice, oftentimes when they would go to no one else. He always gave them two sides to a situation. Whether they needed advice for good things, or when they were in trouble, they always sought his opinions. He never discriminated nor looked down on anyone who admitted their wrongs. He always made you see the bright side of every situation.
Bobby had a great attitude and spirit even with plenty of things to make his life hard. In addition to having Fabry disease, Bobby lost his lower leg when he was younger. Because of Fabry disease, he lost a great deal of his hearing, his heart continued to worsen over time, and he suffered for years with the many other adverse effects of the disease that made his daily life hard. In recent years, Bobby had a defibrillator implanted in his chest to keep his heart pumping regularly. He could no longer work or drive a car. Bobby took a bus to and from his bi-weekly enzyme replacement therapy infusions that made his two hour infusions a 12-hour long day.
Bobby Toby gave what he could to others in the hope that it would be easier for them than it was for him. For three years, Bobby participated in clinical trials for an investigational medication and later follow-on studies for the approved medication used to treat Fabry disease. It was a blinded study so he didn't know if he was one of the participants getting the real medication or one of the participants getting placebo. But to him it was worth it for the benefit to others with Fabry disease. To participate in the trials, he traveled about 5 hours each way to the Duke medical center to receive an intravenous infusion that lasted several hours. It was a two-day trip every two weeks. Bobby Toby was a champion for the Fabry disease community.
Bobby's family was hit hard with Fabry disease many years ago. He and his sister Martha lost their 4 brothers and one sister to Fabry disease, all at a young age.
This remembrance of Bobby Toby (September 2nd, 1944 - September 23, 2007), a true hero in the fight against Fabry disease, would not be complete without mentioning his other passion. He was a sports FANATIC! He especially loved baseball, the Yankees to be exact. He began his hobby of collecting baseball cards when he was a small boy, and continued until his death. He was like an encyclopedia when it came to sports statistics and information.
Bobby's friends and family all miss him just as we miss him in the Fabry disease community. Bobby left behind a memory that will continue to warm our hearts. We will think of him often and be inspired to do for others what he did for us
Mr. Bobby D. Toby Sr. was 63 years old when he passed away from health complications related to Fabry disease. He is survived by his two daughters, Angie and Summer, his son Hank, his sister Martha, his grandson Cameron; his faithful dog Penny, and a host of nieces and nephews.