"Excellence is the result of caring more than others think is wise, risking more than others think is safe.

Dreaming more than others think is practical and expecting more than others think is possible.”

 

These are the words inscribed on a poster in my office. I bought it because the sentiment expressed my husband’s personal creed; the way he lived the 39 years of his life… That he lived in this way is not ordinary. The fact that he lived in this manner is astonishing given the considerable personal health obstacles that he confronted during the course of his life. Larry was born a hemophiliac, his blood was deficient of clotting factor required to form a firm clot. As a child, he endured frequent hospitalizations. He was forced to infuse blood product containing the missing clotting protein. He was infected through tainted blood product in the early 1980’s with the HIV virus and hepatitis. Still, he refused to spend life on the sidelines. He biked, hiked, went white water rafting and enjoyed all sports and games. He was so competitive, and always expected to win. Often the physical activity had its price – he was often bruised for days – but for him, this was well worth the cost. After all, excellence is the result of risking more than others think is safe.

Together, Larry and I pursued having children of our very own. Most doctors, while sympathetic, refused to consider the possibility of Larry fathering his own children because he was HIV positive and I was negative. Even this did not daunt Larry’s dream to become a dad. His research led us to a doctor in Milan, Italy who had developed a method to remove all traces of HIV from semen. In over 500 inseminations carried out by his laboratory, not one had infected the mother, and in the 200 resulting pregnancies, not one infant was infected. Our persistence was rewarded. We became the first HIV discordant couple in the USA to safely secure parenthood. Ashley, now 22 and Taylor, now 21 are gorgeous, healthy and HIV-free. But then again, excellence is the result of dreaming more than others think is practical.

Since Larry’s death, I’ve thought a lot about our lives together, and yes, in spite of everything, I consider myself lucky. Lucky to have had 17 excellent years with Larry. I’ve established a scholarship in his memory to be awarded to graduating High School seniors pursuing their education. Our mission is also to provide awareness for hemophilia and organ donation.  Larry would EXPECT us to live life to its fullest …But then again, excellence is expecting more than others think is possible…

He worked tirelessly on the local and national level as an advocate for the bleeding disorder community. He lobbied Washington for the passage of Ricky Ray, a bill that provided aid to those individuals infected by the tainted national blood supply. Larry was the co-founder of Positudes, Inc. the first non-profit pharmacy in the country. Larry’s concept was to provide fellow hemophiliacs the blood factor and drugs they needed, while helping them manage their chronic disease by sharing his personal knowledge and positive attitude. His commitment to Positudes was so strong that he responded to calls any time of the day or night. After all, excellence is the result of caring more than others think is wise.

 

Tragically, Larry lost his life not as a direct result of his HIV, as most would expect. He developed an infection in his leg, which he was unable to beat due to his compromised liver function. (Both a side effect of his HIV drug regimen and hepatitis.) He fought to gain a spot on the liver transplant list, and we moved to Pittsburgh Presbyterian Hospital, one of the only hospitals in the country to perform a successful liver transplant on an HIV positive hemophiliac. On September 28, 2001, Larry became one of the 16 people that die each day while waiting for an organ transplant. Larry would want people to know that it is possible for a single donor to help or save as many as 100 recipients, and that the average age of organ recipients is 39 for kidneys, 45 for hearts, 43 for lungs, 32 for heart/lung, 36 for livers and 35 for pancreas. In other words, young people in the prime of their lives; most of them mommies or daddies, like him.

Love, Carol Madeiros

ABOUT LARRY