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Nikola’s Story

Updated: Oct 12, 2020

My life with HD. My life with HD began when I was a small child, I was six when my dad began to show his first symptoms. He began to have frequent mood swings, his hands clapping, he didn't control his movements. My mom, colleagues at work, began to notice the speeches, my dad still didn't want to admit anything. Once he crashed the car and it forced him to go test himself. His mother, my grandmother died of HD, so there was a chance that he also had HD. The tests were unfortunately positive. HD has been here with him for ten years.

And what is life like with HD? It's hard, tired, painful but such is life. Unfair!!! It's a daily struggle. It's hard to see how life has changed with HD. Suddenly dad doesn't care about us, we care about dad.

When dad was healthy, he was amazing, we did everything together, he was my best friend, he played with me, he went shopping, he played football, he taught me to ride a snowboard, on a bike, he taught me to read, he was a great role model. And still is. He fights a serious illness every day and even if he doesn't win, he will be a hero in my eyes forever.

I'm 17 now, I didn't take the disease well a year ago. But now I understand everything. I was terribly worried about how unfair life is but it just it. I'm sorry Dad won't dance with me at dance class, he won't take me to the wedding, my children will not have a grandfather but that's life. I haven't talked to my dad in a long time, I was angry that he is ill and it was hard for me to look at the disease too, but I can't blame him. He didn't choose it. I get it now. And I love him even with HD. It is difficult to see the views of others when we are outside, they think he's drunk, it's hard to see how he can't walk, talk, eat... but he's my dad and I love him!!! Let whoever wants think what they want, I don't care about it. I love him as he is. And I still want to enjoy our time together while I can.

My biggest concern is about my sister. Because HD is a genetic disease with autosomal dominant transmission from parents to children. My sister and I have a 50 percent chance we'll be sick. And I'm worried about her, she is my angel, my love, my everything. And the only thing I'm afraid of is that she could have it. Because this would be cruel. She is the most amazing person in my life. She must not have it. Even if she did, I believe there will be a cure soon and all this evil will end.

My big support in all this is the group Huntington's disease youth organization. I met a lot of new people who experience similar things, I can confide in them, when I feel bad they will help me, it's great to have someone who is the same. Thank you all, you are amazing!!!! My friends are also big support, I can tell them what's bothering me and even if they don't know what it's like, they try to help me. The big support is also my mom. She is an amazing woman who can handle the role of mom and dad. She is strong, she takes care of us and Dad, she gives us her love, she manages everything, I love her.

And what are my feelings now? HD has already become a part of my life and she didn't just bring the bad. I have amazing friends, experiences and also tattoos thanks to her. The letters HD under the breast indicate severe Huntington's disease around which my life took place, but everyone has something bad in life.

Huntington's disease affects one person per hundred thousand. So is it happiness or unhappiness? Definitely a misfortune but we have to enjoy that life with HD.

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