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Katie P: Daughter of Father with Scleroderma

My dad has a very rare form of Scleroderma

Summer for Katie Putnam by Sherrill Knaggs, ISN Artist I am fourteen years old and I have a father who is going to die very soon. He was diagnosed about two and a half years ago. At first we thought it was food poisoning from the ice tea that he drank. One day when my younger brother and I were in school we got a phone call from our grandmother telling us that our dad was in the hospital in critical condition. They came and picked us up and we went and sat in the hospital waiting area for almost four hours while my dad was in the operating room having a pacemaker put into his heart.

When we got him home and settled down it seemed as though he was a different person than before. The really bad part about this time was that my parents were divorced and my older sister lived with my mom in Wisconsin, three hundred and eighty-eight miles away from where we lived in Indiana.

My brother and I soon learned how to cope with our father's disease. We knew that many of the things that we were used to doing had to be put on hold until my dad could drive again. It was a very hard time for my brother and I because we had never had to take care of the person that took care of us before.

The good thing is that our grandparents only lived a few miles away so if we needed them they could come quickly. Over the years my father has come very close to passing away but he is still here with us. He has had to go to the emergency room so many times I cannot even begin to count.

Now I live with my mom and sister in Wisconsin. My brother still lives with my father. My dad is forty-three years old and he has been diagnosed with the rare kind of this disease. The doctors say they can just keep the water level in his body down so he will be comfortable. My dad tells us that he is going to be popping up daisies pretty soon. My dad is still here but not for long so I thought that I would share some of our story with all of you.

~ Update 06-17-06 ~

It was September 2002, and my dad was sick. We had all thought it was the bad tea that he had drank a few days before, but we would soon find out that we were all wrong.

He had a doctor's appointment, but knowing my dad he would not go. It took a while but we talked him into going. When he got to the hospital they took him by ambulance to another, bigger, hospital, because the left chamber of his heart was not beating! He went into surgery, and a pacemaker was put in. It was hard to see my dad in a hospital bed, because he was a tough guy, he built bridges for a living and he was the foreman.

After that surgery the problems began to come. My dad soon got sicker and sicker and there were more and more trips to the hospital for blood tests, and other things that had to be tested. The doctors told my dad that he had a disease that was called scleroderma, and that it was rare to find it in men.

My brother and I were taken into and room and explained what was going on with our dad, and what we had to do to help him stay strong. It was a lot to take in, because it was just us two and our dad, and being thirteen years old and the oldest, I had the responsibility of taking care of everything.

Our dad fought this disease with all his heart for two years. In those two years my brother and I spent more time in the hospital than we did in our own home. We shared many happy moments, but those were overshadowed with the sad and unhappy ones of seeing our dad not being able to do all the things that he could before, seeing him unable to stand for more than ten minutes, or go to a sporting event to cheer my brother or I on. The hardest/saddest was seeing him cough blood and being so weak and skinny and so helpless. We could not do anything to make the pain go away. It was hard for us to go through this, but we did because he needed us, and we needed him.

Our father's battle ended on Sunday May 30, 2004 at 1:00pm. He fought long and hard, but we know that he is in a much better place with no suffering. When he passed there were many people who came to our side to support us, and I will be forever grateful to those people.

To Contact the Author

Email: [email protected]
Story posted 05-24-04 SS
Story update edited 06-16-06 JTD
Story update posted 08-20-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin

Survivor Stories: In Memory

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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