HOPES For Kids (Non-Flash, Part 6) "Bryan's Dad Has Huntington's Disease"
An Illustrated Introduction to HD, For Kids & Families
Scenes 17-20
“Eventually, these altered huntingtin proteins cause enough damage that the nerve cells containing the clumps begin to die. When enough nerve cells die in the basal ganglia regions of the brain, people start to have problems doing the movements that they always did before. This can be followed by changes in the person’s personality. For instance, the person might become more sad at times or more grouchy.”
After the doctor finished, Bryan’s dad asked, “So do I definitely have this disease?”
The doctor replied, “I don’t know for sure because your attitude changes and problems with moving could be caused by something other than Huntington’s disease. But since you said that your mother had Huntington’s disease, this means that there is a 50% chance that you might have it as well, just like a flip of a coin.”
In order to see for sure if Bryan’s dad had Huntington’s disease or not, the doctor suggested that Bryan’s dad go to a genetic testing center where he could give some of his blood to have it tested for the disease. Bryan’s dad went the next week.
At the dinner table one night, Bryan’s dad told him that the results of the test had come back from the genetic testing center. He said, “Bryan, I don’t know how to tell you this, but the test that I took showed that I do have Huntington’s disease. That is the reason I have been acting so strangely.”
Bryan could tell that his parents were upset, but they were trying hard to be brave about this news. As his dad finished talking, Bryan saw that his mom was beginning to cry. Bryan was not used to seeing his mom cry. He was also scared to hear that his dad had Huntington’s disease. Bryan felt overwhelmed and this made him cry too.
Later that night when Bryan was going to bed, his parents came into his bedroom to tuck him in. Bryan’s dad said, “You know Bryan, this disease may cause a lot of changes in my behavior from now on. The doctor even says that these changes will get worse over time.”
Bryan’s mom added, “But even though some things your dad does might start to change, he will never stop loving you. We both love you very, very much and nothing about this disease is going to change that. There may be a lot of challenges for us in the future, but the most important thing is that we keep a positive attitude and keep loving each other.”
Although Bryan still felt a little sad, these words from his parents made him feel much better. “Keep a positive attitude and keep loving each other,” Bryan repeated to himself.
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Last Modified: 10-24-04
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“Eventually, these altered huntingtin proteins cause enough damage that the nerve cells containing the clumps begin to die. When enough nerve cells die in the basal ganglia regions of the brain, people start to have problems doing the movements that they always did before. This can be followed by changes in the person’s personality. For instance, the person might become more sad at times or more grouchy.”
After the doctor finished, Bryan’s dad asked, “So do I definitely have this disease?”
At the dinner table one night, Bryan’s dad told him that the results of the test had come back from the genetic testing center. He said, “Bryan, I don’t know how to tell you this, but the test that I took showed that I do have Huntington’s disease. That is the reason I have been acting so strangely.”
Later that night when Bryan was going to bed, his parents came into his bedroom to tuck him in. Bryan’s dad said, “You know Bryan, this disease may cause a lot of changes in my behavior from now on. The doctor even says that these changes will get worse over time.”
