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Memorial created 04-9-2006 by
Linda Lewis
Jerry "Grant" Lewis
December 19 1979 - January 17 2006

"Hi, MY NAME IS GRANT LEWIS, I AM FROM A SMALL RURAL TOWN IN MISSOURI, AND I HAVE AIDS." (this was Grant's opening at every speech he gave) Grant Lewis was a TEACHER. He spoke to thousands across the nation about living an entire life with HIV/AIDS. He taught people that no matter what life hands you, it is what God had planned and you must deal with it to the best of your ability. Grant did his best to make sure that people knew that living with HIV/AIDS was devastating, but only if you allowed it. He spoke out about his experiences of discrimination at the age of 12 when surrounding schools would not play basketball against his team , The Wildcats, because he was infected with HIV and at the age of 15 was asked to leave a motel swimming pool that was open to the public. Never did he complain, only made sure that everyone knew that people with HIV/AIDS are human. The last words that Grant would leave in his audiences' minds were: "I DIDN'T HAVE A CHOICE WHEN I BECAME INFECTED, BUT YOU DO!!"

 

Grant was a BROTHER to not only his natural siblings, Blake and Ashton and his adopted sister and soul mate, MaKayla, but to their friends and many, many foster siblings. They would often tell him about their problems and he would listen intently, but ending their conversation with something like, "So what can you do about it?" or "Life isn't fair, but you can do with it what you want." In this picture is Eden (in middle), one of his favorites. Eden grew older, went to college and later had a child of her own, but she was always there for Grant if her help or presence was needed.

 

Grant was a JOKESTER. He never worried about what people thought. He was honest, sincere and straight-forward with everyone. He loved to argue to prove his point and because he was considered "different" by society, he played on it at times. He loved a good joke or prank and his laugh still rings in our ears.

 

A "Grant Story" Grant's first name was Jerry, but he went by his middle name. He was a little on the onry side and was in trouble with mom a lot. Neil Willenson, friend and founder of Camp Heartland, didn't know that his first name was Jerry and when we told him, he made the comment, " I didn't know that! I thought your first name was d**m*t! Neil also always said that Grant was "an equal opportunity friend or enemy".

 

Grant's HEART WAS TRUE to one of his favorite places, Camp Heartland, the nation's largest camp for children infected and affected by HIV/AIDS. He was a camper at the first session in Milwaukee, WI in 1993 and in 1996 he became a couselor for the camp. Some of Grant's closest relationships outside of Licking developed at Camp Heartland. His friends, Neil, Sami, Susan, Janet, Lindsey, Joey, Ryan and many others helped him to become the man he grew up to be. He was a member of the camp's first "JOURNEY OF HOPE AIDS AWARENESS TOUR" in 1994. He and other children, on a bus, traveled from New York City to Orlando, FL speaking at businesses, colleges, high schools and middle schools and churches to make others aware of the disease. He also did many other speaking engagements for Camp Heartland in various cities. For more information visit www.helpkids@campheartland.org or phone 1-800-724-HOPE

 

Grant was a WARRIOR FOR JUSTICE AND HUMANITY. He worked endlessly educating our country's leaders in Washington D.C. about HIV/AIDS, especially working in the hemophilia community to help try to right a wrong that had been done to not only himself, but approximately 10,000 others including his uncle and many, many friends. As a young child, Grant testified at senate hearings about HIV issues that were affected by the Ryan White Funding. At age 14, he testified along with his mother and hundreds of others at the National Institute of Medicine hearings on the issues of creating a safer blood supply for all Americans. In the picture above Grant is pictured with Missouri Senator Kit Bond presenting him with the book, "Cry Bloody Murder", a recount of the hemophilia catastrophy. Below, Grant is pictured at a Ricky Ray Hemophilia Relief Fund Act rally on the steps of our nation's capital. Grant's very close friend and companion, Ryan Chedester had just passed away from hemophilia/AIDS complications just weeks before. Ryan was 13 years old.

 

GRANT'S TESTIMONY AT THE NATIONAL INSTITUTE OF MEDICINE HEARINGS ON BLOOD SAFETY------------ My name is Grant Lewis. I am 14 years old and in the 9th grade. I live in a small rural area in the Ozarks of Missouri. I have mild factor IX hemophilia and I have full blown AIDS, a disease no child, teenager or adult should ever have to experience. I am one of some 10,000 people with hemophilia in the United States who became infected through the use of blood products. I was infused between the ages of 2 and 5. I did not have unprotected sex nor did I ever use or share dirty needles. I have hemophilia, had minor bleeds and was infused with blood products. In 1982, the same year I received my first infusion of Factor IX, there was big discussion and suspicion regarding the transmission of the virus through blood products. Whey then were we allowed and urged to continue its use? In a letter dated July 6, 1982 from Dr. Bruce Evatt to Dr. Louis Aledort, it states, quote, "Because of the population of patients infected we have been suspicious that it may be units of blood products. Hemophiliacs would be prime candidates to receive the syndrome," unquote. In a Hemophilia Newsnotes dated December 9, 1982, a total of 7 cases of AIDS had been identified by the CDC (Centers for Disease Control), two of the patients were under 10 years of age or less. The memo also states, "children with hemophilia must now be considered at risk for the disease". It also states in this memo that the number of cases continues to increase and the illness may pose a significant risk for patients with hemophilia. By December 21, 1982, 12 days later, a total of 8 and 2 highly suspected cases of AIDS was now in the hemophilia community. Another Hemophilia Exchange Information memo with this same date says that "There is an increased concern that AIDS may be transmitted through blood products". Examples of patients who should not use concentrate were given as follows: -newborn infants (through age 4) -newly diagnosed cases of hemophilia; and -those with mild forms of the disease (hemophilia) I met the criteria in all three categories. Why then was I infused and why was it not stressed, told and retold to the entire nation the severity and risk involved? I know, like hundreds of others, that if my mom had been told and had known all the details, she would never have allowed one drop to enter my body. Instead, I was infused twice more with no idea or conception as to how it would affect my future. For the last 3 1/2 years I have not had much of a future to look forward to. I spend far too many hours at doctors, clinics and hospitals. I have seen and experienced first had the illness and death of many friends, including the death in 1989 of my uncle who also had hemophilia and AIDS. Most of my friends have been children, who, like me, were thrown into a world that we will never understand. We were not told of the dangers hidden in our medicine, dangers that were known by a lot of people and organizations. Dangers that very well could have been prevented. Why then do I have to stand here today and be a part of an issue that was so unnecessary? I don't like being at places like this or going to doctors or having my bloodwork done every month. I would rather be at school with my friends, playing basketball and baseball, the things that I have had to leave behind due to the fact that I go to doctors and clinics far too much to actively participate and be a part of. Due to this disease I have also had to battle fear, prejudice and ignorance of people reagarding AIDS. I would like my voice to represent the children with hemophilia, no matter what age, because we are all someone's child. I want answers so that my little sister, Ashton, who is a carrier of hemophilia, will never have to worry for her children about the safety of their medicine. Answers are needed so that my parents and all of the others can say and believe that they did all they could and what they thought was right. The burden needs to be lifted off our community and answers found and displayed as to the real cause of this great physical and mental disaster that has been placed upon our families. Thank you for your time and consideration regarding this issue. I hope you will use every resource and make every effort possible to unmask the truth that has been hidden far too long, the truth that so many of have had to pay with our lives. Show the world that our government is willing to intervene in injustice to its citizens. We can never regain our lives back, but with your help today, maybe we can be assured that our blood supply will be clean and safe for the future.

 

Grant Lewis was a FRIEND, a friend who cherished his friendships. His hometown friends were his most treasured and closest. Many times Grant told me, his mother, that "He had the best friends in the world and that he knew, no matter what they would always be there for him as he was for them". "A FRIEND IS SOMEONE WHO DOESN'T LAUGH AT YOU IF YOU'RE IN JAIL, BUT IS USUALLY THERE WITH YOU!"

 

Grant and friends celebrating his 17th birthday. Every year was a milestone!!!

 

FRIENDS AND "CHEERS" TO GRANT ON HIS 26TH AND FINAL BIRTHDAY!!!

 

Smiling with his hometown friends/classmates of 16 years that never left, always loved and stood besided him, celebrating his 26th birthday, December 2005. Front: Tim, Melissa, Anne, Grant, Olivia, Troy, Chris Back: Nicki, Lindsey, Rob, Chana, Josh

 

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