My auntie Debbie is awesome to me. My whole family is and I have great friends ...
My son Jimmy was perfectly healthy, our first child. In June 1987, at the age of six, he contracted E. coli O157:H7. It developed into HUS (hemolytic uremic syndrome). The last 20 years have been very difficult for Jimmy and our family. Jimmy suffered from renal failure and was on dialysis for several months. He was affected neurologically as well. He suffered a massive stroke that unfortunately left him with paralysis on his left side. He was in a wheelchair for 11 months then graduated to a walker and finally with help from a brace that he has to wear everyday is able to walk on his own. Over the years, we have dealt with many obstacles, the worst being seizures from the stroke. Although Jimmy did adapt to his disability and has relearned how to do everything one handed, the seizures have been our worst nightmare.
Jimmy has suffered from seizures on a daily basis for 20 years. Jimmy has had so many falls from seizures we lost count. A broken nose, broken clavicle, broken toes, scratched corneas, many stitches and broken ribs, are just some of the things his falls have caused. This is Jimmy’s life, very limited. He cannot go anywhere alone or unattended. We have tried countless medications but no relief.
In May 2009 Jimmy underwent brain surgery to see if we could improve his quality of life. Unfortunately, while we had some improvement, it didn’t last. Jimmy’s life has been filled with new types of therapies, several surgeries on his left arm and hand, as well as two brain surgeries.
In 1987, when Jimmy needed multiple blood transfusions to survive, little did we know in 1996 we would find out he contracted Hepatitis C. Another blow, Jimmy’s liver is being damaged slowly and will most likely need a liver transplant in his lifetime. All of this because of E. coli.
He needs daily support and my husband and I work different shifts to make sure he’s cared for. Our family has been fantastic, without them I’m not sure we would have gotten through those rough days. I could go on and on how our entire family has been affected by E. coli we just take one day at a time.
My name is Jimmy. I am 28 years old. I don’t remember getting sick when I was little. I have been this way my whole life. The thing that I don’t like the most is having people follow me everywhere. I know it’s because I fall a lot from seizures but I just want to be normal and go for walks by myself. I can’t walk too far so sometimes I need a wheelchair. I hate when people stare at me in the chair. Everyone looks at me, but I can’t help it I can’t walk too far and I get too tired. I will never get my license to drive. People have to drive me everywhere.
I’m just lucky when I have a seizure and fall I don’t feel it or remember it. I just hurt after. I feel bad my mom has to always take me to doctors, I like my doctors a lot but I’m sick of going to doctors and hospitals. I get angry sometimes I can’t do things that I want to do. Do you know that I have worn boxer shorts when I take a shower for as long as I remember? I have had seizures in the shower before and fell. I don’t want my sister or mother to come and help me when I’m naked. I wish that I could take a shower without boxers on and be able to lock the door. I can’t lock the door in case I fall someone needs to help me.
My mom has told me that many children have died from HUS, so I guess I’m lucky that I survived. My auntie Debbie is awesome to me. My whole family is and I have great friends but I wish that this never happened to me and I could go to college like my brother and sister. That’s it I guess.