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A Twist of Fate

April 13
by
Lindsay Rutz
in
Health
with
.

Why do bad things happen to good people? That’s the cliché phrase we’ve all heard and used before when unexpected things happen to people we know and love. It’s hard to accept these unfortunate events, but sometimes there isn’t such a horrible ending.


An unexpected twist of fate happened to my aunt and uncle’s family, but out of it all, they turned a difficult situation into something worthwhile. My aunt and uncle are two of the most caring and kind people I have ever met. Never once in my life have I heard of either of them doing something wrong or unkind.

They live the classic family life: a house in the suburbs with the perfect family photo.

My uncle is an accountant, and my aunt is a stay-at-home-mom, but does some tutoring on the side. They had two boys, Luke and Matthew, but my aunt really wanted to have a girl in the family. My aunt specifically told me, “Don’t get me wrong, I love my boys, but I definitely need more girl power in this house.” So it was decided, they were going to try for a girl. At the beginning of my freshman year of high school, my aunt announced that she was pregnant and the whole family was excited to hear what the gender of the baby was going to be.

A couple months later my aunt found out the gender, and lucky enough, it was a girl. I have never heard someone as excited as my aunt was when she announced this news. The whole family was in a “baby hype” mode and couldn’t wait for her to come. Finally, after nine months of pregnancy, my new baby cousin was on the way. I was at my grandma’s house, waiting on the call from my aunt and uncle, but it seemed to be taking longer than we expected. We didn’t get a call until the next day, with some much unexpected news. When my aunt and uncle called, there was a sorrow feeling that swept over our family.

My aunt told us that our new baby cousin, Amalie, was diagnosed with a rare disease called kabuki syndrome.

%tags Health Overcoming Challenges

Kabuki syndrome (KS), is a disease that presents a child with unique facial characteristics, mental retardation, and socio-emotional delays. In other words, Amalie has disabilities that don’t allow her to develop and fully function like an average infant should. For the first 9 months of her life, she was put into a lower body cast after hip surgery to help set her hip bones and joints correctly. To help with the rest of her muscle movement, she had to go through extensive physical and speech therapy when it was time she started to learn how to speak. This was a very tough time for my aunt and uncle to go through. My uncle had to take time off of work to help take care of my other cousins, Luke and Matthew, while my aunt took Amalie to countless doctor’s appointments and therapy session.

My uncle said, “I have never been so stressed and so worried about someone in my entire life. At one point, I almost lost all hope because there was so much stress put on our whole family.” My aunt replied, “But we managed to get through all of this together.” My cousins helped by cleaning around the house and not causing any trouble when “baby Molly” was around. They came together as a family to support one another in this very difficult time.

Five years later, my cousin, Amalie, is now walking and improving her speech every day. My aunt has enrolled her in pre-school and is absolutely loving it. “At first it was hard for her to be in such a social setting, but now she loves it. She’s made some friends and doesn’t stop talking.”

However, there are some words that she struggles with, so Amalie is taking sign language classes to help get her points across to people. She does still have some developmental issues, like being too small for her age and not being able to carry on full conversations like an average five-year-old should be able to. Despite all of these setbacks, Amalie is one of the happiest five-year-olds any person has ever seen. “She loves to learn new things…math is one of her favorites”, my aunt says, “…and even though she has physical setbacks, she is always beating up her older brothers and is the toughest girls there is.” My aunt and uncle have given so much time and effort into helping their daughter live the most normal life she could, and I admire them very much for that. Not every couple could have done what they did, given the amount of stress that was added to their life.

Not to mention, my two other cousins, that helped out so much, even being as young as they were during that time. Due to their efforts as a family, Amalie can live a normal life and enjoy the life she was given, despite the hardships she has endured. Not many families could have come together like my aunt and uncle’s family did. Despite all odds against their daughter, they didn’t let it come between them.

Together, they put in the effort to help her and give her all the care she needs to live a normal life.

This is a quality I truly admire because having to give up leisure time and work time can be very strenuous on a family, especially when there are two other young kids in the family. They took what they were given and made the best out of a difficult situation, and are now raising one of the most strongest kids I have ever known.


Their family is a perfect example of how to handle life’s unexpected events in a manner of grace and determination.

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