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Amanda's Story

Being a Kabuki Syndrome Sibling

Having a Kabuki Syndrome Sibling can be super tough. Do you have a sibling? Would you like your sibling to die? Of course you don’t. I know what you are thinking worst case in scenario? Wrong! This is just one little thing that could or would happen. Kabuki Syndrome is a very serious thing too. It’s hard for the sibling, parent, the victim, and the entire family. It’s super stressful for the sibling of the victim. That sibling now has to do a lot on their own. They don’t get a lot of attention and they are ignored a little because the parent has to pay more attention to the victim that is sick most of the time. It’s not a fun thing. Either way it goes you do not want Kabuki Syndrome. Kabuki Syndrome… G-tube to being sick to almost dying, its tough.

I know what you are wondering, “What is Kabuki Syndrome?” Kabuki Syndrome is a syndrome or sickness that can hurt or make your sibling different. It is much like asthma. Except when your sibling gets it they have it and they can’t get rid of it. Although they may get better at controlling their disabilities they will still have it.  Your sibling isn’t normal though. They’re special. They can do things that you can’t like bend their knee backwards.  It may be hard but no matter what you have right now is what you’ve got and after a while you will like what you have.

Kabuki Syndrome is life threatening. For instance I have a sister that has Kabuki Syndrome and when she was born she couldn’t suck to feed herself. So for a while my sister was starving to death. Then they installed something called a G-Tube. A G-Tube is a tube installed into your stomach so you can be fed. Thankfully that G-Tube saved my sister’s life. That wasn’t the only thing that helped save my sister’s life though. God helped a lot too. I thank God all the time for saving my sister. My sister was the best thing that happened to our family. She changed us in a good way. God gave her to us for a reason. It was a tough time. My sister could have died any minute. It was stressful too. There was a very weird feeling inside when I heard that too. It was sad, angry, and confused. The feeling is hard to describe. But now I am grateful to have my sister.

Kabuki Syndrome has physical affects too. Their knee or most other joints can bend backwards. Or when they walk they waddle like a penguin. Fun to watch but when you realize what’s going on nothing is much fun. They can’t really run either. One way or another, it’s stressful. Even when you are bigger anything can upset you now because when you were so worried and so scared and crying all the time, it has an emotional scar on you. It traumatized you.

Although Kabuki Syndrome isn’t the toughest thing around, it’s still hard. The victim has the hardest time of all. It’s hard for the whole family. If I could go back in time to pick a different sibling I wouldn’t. She has left a scar on me but she changed me in a good way. She gave me a gift. I gave her a gift. We will always be sisters and it may be tough but it’s a little fun. Stressed out or being scared or crying, your sibling is worth it. Who knows you and your sibling might change the world someday. Just be sure to love them, your family, and yourself because love will help you and your sibling. Although the very best thing to do is to believe that everything will turn out to be ok.

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