The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
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New York New York 10012
800-221-4602
info@ndss.org 

Johnny
Johnny

Johnny was my cousin by chance but my friend by choice. This decision was made early on in my life and was fairly easy. How could you not love someone that greeted you with open arms every time you saw him? He taught me that being different was not only ok but that was what made him so special. Growing up, kids were not always open to the idea of being friends with someone who was different than they were. I will admit I had those feelings sometimes too but Johnny helped me understand to like the person for who they were inside. He was different looking, but only because he had a smile on his face all the time which is a rare quality to see from any other person. Johnny loved his job because he felt like he was contributing to the family. He loved to clean and do the dishes. To most people this would be yet another job that they felt like they had to do. Johnny enjoyed these things and took pride in his work to make it perfect. His diligence and work ethic were something to be admired. Several years ago Johnny started suffering from seizures. This would eventually lead to several other health conditions that would make his life a little more difficult. He did not let it stop him. He worked up until it was just not healthy for him to be in that setting anymore. This was a hard concept for him to understand because he always wanted to pull his weight in the family. Little did he know that his presence alone was more of a contribution than he could have ever imagined. Over the next several years Johnny's health would decline and he eventually became bed ridden. He had a team of caregivers that were with him every day and they grew to love him as much as we did. Even though he was unable to speak you could see it in his eyes and when he moved his feet to the music to show that he loved them too. Johnny was unable to express himself through words and yet he still found a way to make the people around him feel important. In early July, Johnny passed away but into a better life. He was reunited with his mom and dad, which is exactly where he wanted to be. His life was not one that people mourned but one they remembered with a great smile. His legacy is something that will live in our family forever because he touched each person's heart in a different way. Johnny truly was one of the most remarkable people I have ever met not because he had Down syndrome but because he did not let the disease become him. He overcame the hand he was dealt and became a wonderful man that has forever changed my life.




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