“His Fight, Our Fight”
By Kylie Gulley
Kylie Gulley is 14 years old and from Long Eddy, New York. She has three sisters, Korin, Taylor, and Skylar, and one brother, Martin. By sharing her story, Kylie hopes siblings and families remember to “make every day count.”
My name is Kylie Gulley and I am a MPS sibling. My little brother Martin is 6 years old and has MPS IIIA, also known as Sanfilippo syndrome. Martin was diagnosed at age 5. He started with over 100 words and as he grew older that number decreased, and now he is down to about 30. When Martin was 2 ½, he had an early intervention teacher come to the house. She would bring toys and he would play with them, but then the next week she came and he didn't know what to do. So that's when we figured out something wasn't right which led to his diagnosis. Ever since Martin was diagnosed, I've learned to never judge someone by what they look like or even seem like. For example, people think Martin is not smart just by looking at him but I swear he's magical because he gets things without even being seen. Also, Martin has taught me to like people for who they are. Martin has been a major influence on my life. I've learned not to be jealous of him. Even though Martin gets a lot more attention, I’ve learned that it's because he needs it more than we do. Instead of being jealous, I go everywhere that I can with my mom and him because that is how I can still be noticed. Martin has influenced me to not only be a great sibling when others are around, but to also be a great sibling all the time. He has taught me to never underestimate someone because you can do anything if you truly believe.
While Martin has taught me a lot, there are many challenges that come with having a MPS sibling. There are a lot of challenges for me because I didn't grow up with MPS in my life. Sports are so hard to do for my mom, who has to run back and forth from appointments to games. However, we still do sports, except this winter season I tried out for the basketball team and I was suffering because I was made to sit the bench because I only made 4-6 practices. The further into the year it became especially hard because some days certain words can just set you off. On some days I would break down in class and have to have a moment to myself. This is only my 2nd year with MPS in my life now so school gets complicated having to listen to others. But it's all worth it in the end, when Martin smiles, laughs and just is himself.
But I used to always think I never understood him until one day I could see it in his eyes that something was wrong. That day I blew up his bounce house in the house and he was playing then he just stopped and he had his head down and I looked at him and that's when I noticed something wasn't right. He looked me in the eyes and all I felt was a deep sadness from him. Until he looked up and just laughed and that's when I noticed I could understand him through his eyes. At that moment I didn't have to try to guess I just knew right when I looked into his big brown eyes.
Martin is always happy and he lights up my world no matter what...yea he can get on my nerves but I always am nice to him because I know that he doesn't understand right from wrong.
MPS makes life a lot harder. I have never once in my life ever let someone talk about my brother and say mean things. I always stand up for him. I say what he wants to say, because he can't say it for himself.
Siblings with a Mission is a non-profit, international organization established to serve and support siblings of individuals with special needs. All images are found on Google images and are solely used for education purposes. The stories and advice provided by Siblings with a Mission are not to be replaced by professional advice and counseling but to be considered as an additional source of support.
By Kylie Gulley
Kylie Gulley is 14 years old and from Long Eddy, New York. She has three sisters, Korin, Taylor, and Skylar, and one brother, Martin. By sharing her story, Kylie hopes siblings and families remember to “make every day count.”
My name is Kylie Gulley and I am a MPS sibling. My little brother Martin is 6 years old and has MPS IIIA, also known as Sanfilippo syndrome. Martin was diagnosed at age 5. He started with over 100 words and as he grew older that number decreased, and now he is down to about 30. When Martin was 2 ½, he had an early intervention teacher come to the house. She would bring toys and he would play with them, but then the next week she came and he didn't know what to do. So that's when we figured out something wasn't right which led to his diagnosis. Ever since Martin was diagnosed, I've learned to never judge someone by what they look like or even seem like. For example, people think Martin is not smart just by looking at him but I swear he's magical because he gets things without even being seen. Also, Martin has taught me to like people for who they are. Martin has been a major influence on my life. I've learned not to be jealous of him. Even though Martin gets a lot more attention, I’ve learned that it's because he needs it more than we do. Instead of being jealous, I go everywhere that I can with my mom and him because that is how I can still be noticed. Martin has influenced me to not only be a great sibling when others are around, but to also be a great sibling all the time. He has taught me to never underestimate someone because you can do anything if you truly believe.
While Martin has taught me a lot, there are many challenges that come with having a MPS sibling. There are a lot of challenges for me because I didn't grow up with MPS in my life. Sports are so hard to do for my mom, who has to run back and forth from appointments to games. However, we still do sports, except this winter season I tried out for the basketball team and I was suffering because I was made to sit the bench because I only made 4-6 practices. The further into the year it became especially hard because some days certain words can just set you off. On some days I would break down in class and have to have a moment to myself. This is only my 2nd year with MPS in my life now so school gets complicated having to listen to others. But it's all worth it in the end, when Martin smiles, laughs and just is himself.
But I used to always think I never understood him until one day I could see it in his eyes that something was wrong. That day I blew up his bounce house in the house and he was playing then he just stopped and he had his head down and I looked at him and that's when I noticed something wasn't right. He looked me in the eyes and all I felt was a deep sadness from him. Until he looked up and just laughed and that's when I noticed I could understand him through his eyes. At that moment I didn't have to try to guess I just knew right when I looked into his big brown eyes.
Martin is always happy and he lights up my world no matter what...yea he can get on my nerves but I always am nice to him because I know that he doesn't understand right from wrong.
MPS makes life a lot harder. I have never once in my life ever let someone talk about my brother and say mean things. I always stand up for him. I say what he wants to say, because he can't say it for himself.
Siblings with a Mission is a non-profit, international organization established to serve and support siblings of individuals with special needs. All images are found on Google images and are solely used for education purposes. The stories and advice provided by Siblings with a Mission are not to be replaced by professional advice and counseling but to be considered as an additional source of support.
