|Jeramiah Avery Clark
February 24, 1986 – April 30, 2005
Jeramy was born February 24 1986 in Fort Benning GA. He was a happy, healthy baby boy. He lived in Harris county GA; went to school every day, played little league baseball and played with his friends like all kids do.
Jeramy never seemed to run as well as other children, but the doctor informed us not to worry as it was due to his flat feet. We did not worry.
When he was six-years-old, he began having seizures—sometimes up to 15 a day. We took him to a neurologist who gave him medication to control his seizures. The medicine helped for about six months until Jeramy began to stagger and walk like he was drunk.
For the next year and a half, we went to the doctor constantly until finally he gave up and sent us to Atlanta to see a specialist. She diagnosed Jeramy on August 16 1994 after hours of tests.
Friedreich’s Ataxia is what this disease is called—‘no treatment, no cure’ is all I heard her say.
Over the next two years, things were pretty “normal” as Jeramy continued to go to school and play as much ball as possible. But the day finally came when he had to stop playing because he could no longer run.
Instead of giving up on his passion for sports, he decided to be the manager of his team. That was just the beginning of Jeramy’s determination. Despite his physical limitations, Jeramy always wanted to help in whatever way he could. He never allowed anyone to tell him “you can’t”—it was not a term in his vocabulary.
He received his fist wheelchair when he was 10 and gradually over the next several years used it more and more until he was unable to walk or stand.
High school was probably Jeramy’s crowning achievement. In those short four years, he was able to accomplish more than most of us will in our entire lives.
He started ninth grade like every freshman—with ample amounts of nervousness, excitement and anxiety. But determined to experience everything he could and make the most of every moment, he made an immediate impact.
He was a very popular student with teachers and students alike. Many of his friends were seniors.
During his tenth grade year, he convinced the head football coach to let him be a manager. Coach Morrell said only if you attend every practice and every game. ‘No problem,’ said Jeramy.
That year, he attended practice every day and made it to every game, only missing one or two practices along the way due to doctor’s appointments. He traveled with the team to away games and did his job no matter where they were playing. He received a trophy from his coach at the post-season banquet, but the award that meant the most was the standing ovation his teammates gave him when they called his name to the stage to get his trophy.
This was how he spent his entire High School career and life— never letting anything stand in his way.
One night after an exceptionally bad day, I was crying and he asked me why. I told him I was sad because I hated seeing him having such a hard time. Then I asked him, “don’t you ever feel sad and cry?” He said, “Mom, I don’t have time for crying, I only have time for living.”
Well, what could I do but wipe my eyes and smile at this incredibly strong young man?
Jeramy went on to receive many awards including the Youth Achievement Award from the Mayor’s Committee for Persons with Disabilities in 2002. He also went to several elementary schools and spoke to children about disability awareness. He went on trips to the beach with his church youth group, and even made it to his Junior Prom where he took a beautiful girl named Danielle. He was always making sure he did everything he wanted to do. In fact, the only thing he was never able to do that he wanted was have a driver’s license. That was a major disappointment for Jeramy as he was always a big race fan and all- around car guy. But by the time he was 15, he was having several seizures a day and this prevented him from getting his license.
His senior year was great but very difficult at the same time. At this point, his physical condition had deteriorated greatly. He tired very easily and was in pain most of the time, but he attended all of his senior functions and had a great time. He attended the Senior prom with a beautiful young lady named Kaycee and continued receiving accolades such as the President’s Achievement Award for his inspiring and brave spirit.
His graduation was a dream come true. He reached a goal that many thought would have been impossible to achieve. It was very important to him.
Jeramy graduated with a B average (if he would have ever opened a book he might have made A’s). He also had two seals on his diploma, one for Automotive, and one for Technology.
After graduation, Jeramy spent a lot of time at the movies with his friends. We volunteered at his high school to work the school store during lunch once a month (I worked, he socialized). We did many fund raisers for MDA and he hung out with his Firefighter friends.
By the end of the summer, it became very obvious that Jeramy was declining fast. He was in more pain and was having difficulty swallowing. It came to the point when we had to discuss a feeding tube. At first he refused until I promised to never use it to force food or fluid on him. He finally agreed to have the procedure done.
At the beginning of December 2004, he had the surgery to insert a feeding tube into his stomach. As bad as this sounds, it was a great relief as we could now give him his medication without him choking on it.
When he was released from the hospital, he was admitted to Hospice care, this was also a relief. At first it was odd to have strangers coming into our house but they made us feel comfortable.
One worker came in three times a week and helped him with his personal hygiene. A nurse came in at least once a week to check on him and order his medications (there were quite a few).
She also helped me. She kept me informed, answered questions and had awesome ideas to help with problems. The doctor came around as often as needed and at least once a month, there was a social worker and a Pastor. This was his team of great people. Jeramy was admitted to Hospice House in February after his 19th birthday party (which made the news).
He had toxemia and was there for three days and then home again. The next two months were not great, he had several severe seizures and was taking higher and higher doses of pain medication. The last two weeks in April, he spent most of his time sleeping and taking medication. The last week, his pain was nearly unmanageable and on April 27th 2005, we admitted him to the Hospice House to get his pain under control again.
Jeramy was tired. He had fought a hard fight but his body was tired and his organs began shutting down. On Saturday April 30th 2005, at around 12:30pm, Jeramy went home to be with Jesus.
During all the years between his diagnosis and his death, Jeramy did not feel sorry for himself. He always had a smile on his face that seemed to light a room. People were drawn to him as he was very easy going and seemed at ease in all situations. He always did whatever he could to help people. He worked every Labor Day Telethon from the Early Show to the closing credits.
Jeramy LIVED life and enjoyed it to the fullest. He loved God, his family and his friends. He touched more people and accomplished more in his short 19 years than most of us will in a full lifetime.
“I don’t have time to cry, I only have time for living…” -Jeramy Clark