English Paper by Noah

After my baby sister was born, I began to spend more time with my family. It’s amazing how a tragedy to one member of the family, whether it is a newer or older member, brings the family together. It is sad that a tragedy must happen for loved ones to rediscover their love for each other, but in my family, it did indeed happen that way.

It’s not like we didn’t love each other- we just were all too busy. I always have soccer, my sister has other sports of her own, and my mom has somewhat of her own taxi service to perform. That consists of driving me to soccer three times a week and my eight year old sister Mckenna to her Karate or soccer. Ayden Jane Gulley was born October 1st, 2007. She was motionless for forty-eight hours. Although born at Waccamaw hospital, she was sent to MUSC as soon as possible. For the first six months of her life, she was very lacking in muscle and she was still not diagnosed. Finally around six months of age, she was diagnosed with Prader-Wili Syndrome. Finally diagnosed, Ayden was able to start a growth hormone that would help her eventually build muscle on her own. Her growth hormone is an injection every night. It is a small needle but it still is a shot Ayden will have to deal with the rest of her life.

Our whole family has taken part in helping with Ayden’s condition. My mom has basically taken medical research as a side job. Her first job is being a full time mom to all four kids including Ayden. My mom, Janet Gulley, has devoted herself full time to helping Ayden Jane in any way. When Ayden was diagnosed my mom was told the worst situation possible. As my mom started researching, she found a whole organization and people that were fighting with Prader-Wili Syndrome as well. All these people have been dealing with it longer and they helped my mom. Some of the people that are helping my mom are actually medical researchers. My mom was told of the supplements that she can use to help Ayden function as normal as possible. Ayden takes multiple supplements a day. One of them is B-12. B-12 helps with the normal functioning of the brain and nervous system. Once my mom got all these supplements for Ayden we all started seeing miraculous changes. We even started calling Ayden “B-12 Baby” as a joke because of the amount of energy she had after she started taking her supplements.

First my mom got into the research, but soon enough she got us all hooked. Kayla my older sister is very into the medical field, so she understands more of what my mom is talking about than I do. Our mom shows us articles and other sources at which we can read about Prader-Wili Syndrome. All of the information is way over our heads and always confuses me, but it gets us that much closer to understanding Ayden than I already was. Our family has contributed even in small ways such as putting up with the balance beam in the middle of our living room.

Physical therapy is a big part of Ayden’s life. She has physical therapy every Wednesday with Mrs. Jennifer Jennings. My whole family loves Mrs. Jen. She has so much energy and works so well with Ayden Jane. We joke that she knows where certain buttons are on Ayden that make her do things we never thought she could do. Mrs. Jen has a wonderful family of her own, and our families have become quite good friends. Ayden’s “best friend” is Mrs. Jen’s youngest daughter Lilah. Ayden also goes to Hippotherapy. Hippotherapy is physical therapy, just it is horse back riding. She goes to Hippotherapy once a week on Tuesdays. Hippotherapy is for her core strength, because kids with Prader-Wili Syndrome tend to be weak in their core. Also it is to help prevent scoliosis. Ayden is also at high risk for scoliosis. Ayden, at first, did not talk at all. She was extremely quiet. Ayden has speech therapy every other week on Fridays.

Ayden has many struggles in life. The main struggle is that with Prader-Wili Syndrome, she will always be hungry. She eats plenty, but her brain tells her that she is still hungry even with a full stomach. That is why obesity is very common with kids with Prader-Wili Syndrome. Ayden cannot eat grains or very many carbohydrates. That is basically taking away all childhood junk food, such as chips, “Goldfish,” and “Cheez-its.” People may think that she is deprived, but in the long run she will benefit from it. Ayden eats extremely healthy. She eats lots of eggs, fruit, vegetables, and meats. She eats lots of protein and health food. Ayden’s favorite snack is almonds. She eats almonds straight out of the bag. For a special treat, we give Ayden an almond covered in dark chocolate. She loves these treats.

I make it sound as if Ayden’s life is horrible, but really she is as normal as ever. When people find out that she has a genetic disorder, they can’t believe it. Ayden seems as normal as possible. Ayden is a little ball of energy. She is always being goofy and making our whole family laugh. Ayden is more entertaining than anyone I know. She is always giggling or doing something goofy just to make us laugh.

Ayden has completely changed my and my family’s lives. Ayden has changed my whole look on my life. I love Ayden Jane and I don’t regret having Ayden Jane in my life. Sometimes think to myself that I would take Ayden’s disorder from her if I could, but then I realize that we almost have. With all the effort we put in to make Ayden as healthy as possible has made it so that people can’t even notice she has a disorder. Ayden Jane is the best baby sister I could ever ask for, and we all love her.