People discover new things everyday no matter what age they are... You can discover things in school, at your home, or even in another person. I discovered a very important lesson which I will remember as long as I live. The cool thing was that I learned this lesson from a six year old. This six year old wasn’t just your average little girl. She couldn’t walk, talk, dance, or sing. She had Sandhoff Disease. Riley Nicole Luce touched the life of every person that ever lucky enough to meet her and taught them a very important lesson. I will share with you the bitter sweet lesson that we all discovered.
Riley Nicole Luce was born on September 27, 2002 to Dave and Nicki Luce. She was born as a healthy little baby girl but her parents noticed that she couldn’t roll over, sit up, or pick up toys like other six month old babies. At nine months, a pediatric ophthalmologist found red spots in the back of Riley’s eyes and she was diagnosed with Sandhoff Disease two weeks later. Sandhoff Disease is a rare, genetic, lipid storage disease which affects the Central Nervous System. This meant that Princess Riley would eventually lose her ability to swallow and see and would never be able to walk or talk. Riley’s parents would have to suction the saliva from her throat and feed her through a tube in her stomach.
I was there when Princess Riley was born. Of course, I thought she was just another one of our family friends who would get into trouble with my sister and who I would have to babysit when I got older. Was I ever wrong. She still was one of my sisters and my good friends and she was very special to us. You don’t really know what to think when a little girl is diagnosed with a disease that you never heard of when you are only seven. All that I did was ask questions? Why is she like this? Why can’t she talk? Why isn’t she like Emilee? But, we didn’t know answers to these. We never knew such a disease existed until then.
Every person that Riley met was touched. You just take it for granted when someone tells you that you should be happy that you are healthy. But meeting Riley makes you see how fortunate you are to have good health. Of course, every parent wants to see their child say their first word and take their first step but Riley’s parents didn’t have either of these. But that didn’t stop Princess Riley from being loved by her parents and all her friends. Nobody liked to see her suffer but she made you see how lucky we are to be able to walk, dance, and sing.
Riley’s birthday parties were ones that any child would dream about. She had her carnival, her country western theme, and her luau. Then, for what would be her last birthday, her parents chose a Hollywood party. She got to ride in a limo for her first time but the best part was that every person that she loved was there to celebrate with her. We were all dolled up like superstars and got to walk down the red carpet. Also, every holiday was a big hit for Riley! She wore a beautiful dress every year when she went Easter egg hunting with her cousins. Then, at Fourth of July, she would have her nails painted blue and red. Our families got to celebrate Christmas together and exchange presents. Riley’s favorite holiday had to be Halloween as it fell on her mother’s birthday. She always had the cutest and unique costumes! She was Princess Riley, a movie star, a 50’s girl, and, best of all, was her Cat in the Hat costume on her last Halloween. The best part was that she had two sidekicks, my mom and her Aunt Brooke who were Thing 1 and Thing 2. She always had these great big parties on holidays as her parents felt so blessed to be able to share each one with her.
Riley was known as “Princess Riley Bear” to everyone that she knew. We would run up and kiss her every time we saw her. She would barely open her eyes every time we did that. Riley also had the cutest fashions and what her parents call, “BLING”! She of course always had her Hello Kitty ring she wore ALL the time! She also had her fashions of Notre Dame and Michigan which she wore a lot too! Her mom liked Notre Dame and her dad liked Michigan so it was hard to choose which one was her favorite team! Something really amazing that Riley did was donating twelve inches of hair to Locks of Love. Riley also traveled around the country and, to make it extra special, she had “Riley’s Ride” which was their family motor home. Sometimes, I even got to travel with her! Our last trip together, was camping up North at Mackinac Island. It was her first trip there and was really fun!
Something that is really interesting is that the age expectancy of a child with Sandhoff Disease is only 3 years of age. Princess Riley Bear lived to be 6 years old! She had the longest life span of any of the very few children that suffered from Sandoff’s. Our Princess Riley Bear passed away on November 4, 2008. It was hard to go to the funeral. All you could do was feel how lucky you were to be a healthy person. I didn’t have to suffer like her or my parents don’t have to suffer like hers. I felt really special being able to take part in her funeral. I was a Princess who followed up the casket and laid a candle by Riley’s casket. We had a horrible time getting over our lost of a loved one.
As I think of all these wonderful memories, I think of that lesson that I discovered during Riley’s life and death. Nobody would ever want to suffer like Riley did. Feel fortunate to be able to do all the things we take for granted. Be happy that you are healthy and don’t ask for much more.
Written by: Carlee Smoker (12 years old)
3rd Hour English Class
