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Kathy's Story

My name is Kathy, and although I don't have hep, my 11 year old daughter does. I thought maybe my (our) story might help other family members who have loved ones also infected with it.

Our trip into the nightmare began just before Aub turned 10. We got a letter from Hershey Medical Center telling us that she was exposed to the virus during open heart surgery when she was a week old. I picked up the mail on the way to work and me being me, open it to see what the hospital wanted. I read it going down the road, and when it finally hit me, about halfway to work, all I did was cry my eyes out. When I got there all I told my co-workers was that I had to use the phone. When the doctor told me that the odd were that she was infected it took about another hour to pull myself together so I could work.

Up until that time I had no idea what hepc was or that it even existed. You have to understand Aub is a twin. Her brother died at two days old on Mother's Day of 1990. I didn't want to loose another child and at that point it was second only to the fear of figuring out how to tell her what was happening. I got as much facts from the doctor as I could, and when I got home I sat Aub down and told her what was going on.

The first reaction she had was anger, she wanted to "get " the person who did this to her, then she calmed down a bit and the two of us just sat there holding each other and cried for a long while. Once the crying was over, we talked about the fact that the person who donated the blood that was used for her surgery was only trying to help her, not hurt her. She's a smart enough kid to understand all of this, and as I have learned, alot more.

Aub's the kind of kid every parent wants, kind, considerate,very loving, and very open with me, we can talk about anything, at least so far... We kind of held each other's hands through all of this, and in a way, we still are. It hasn't been easy, though I'm sure it could have been much worse. The worse part we deal with is the fear of her friends' parents finding out. She is afraid to let anyone know about it because of the stigma of an infectious disease. The people we have told have for the most part been very supportive, but there's always that chance. Her school has gone out of their way to help her in any way they can. Aub also has ADHD and because of the hep, she can't take the meds to control it. The school has given her a full time aide to help her with her studies and to help her concentrate. It's been a huge help.

The hardest part of all this for me is that I know how this affects her, and I feel completely helpless to do anything about it. I see daily the toll it takes on her, and there are some days I'd just like to cry, but I won't give up. I have to be strong for her. Our strength as a team is what has got her this far, through a biopsy, countless doctors visits at different hospitals and in just the day to day things that come up for her. She's very open with me and there are days we talk for hours about what is bothering her, and try to find a solution to make it go easier. We have talked about the future, and she won't give up, even though she's in stage two. She has set a deadline of another 3 years, and by then she wants to go on whatever therapy thay have out and beat this dragon. Oh yeah, did I mention she has more courage than any kid I know? She doesn't complain about her health, or much else for that matter.

I don't claim to be super mom, or some super person. I just claim to have a wonderful daughter who has taught me what it truly means to live and to be loved. She is my hero.

I hope this story will help other family members of people infected with hep. I guess what I ( we) have learned is that hanging in there and dealing with whatever pops up is the only way to do it. One thing and one day at a time.

With love, Kathy

P.S.- If anyone would like to contact either of us, our e mails are kathogn@aol.com for me, and aubreylynne2001@aol.com for Aub. We'll be glad to help in any way possible.


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    Page last updated: March 7, 2003

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