John-John

This is my brother John-John (This picture was taken when he was getting ready for his confirmation)

A hero to me is someone who influences people for the better. A hero is someone who is kind and is always in a good mood. Heroes are people who have gone through a lot and have taken some risks with their own life. My brother is a hero to me. My brother, John-John was born with Down Syndrome. This means his body is weaker and he will not learn as fast. He has been getting occupational and physical therapy since he was 3 months old! In occupational therapy, he learned how to grab and grip things, and also worked on feeding. This helped him strengthen his tongue muscles so he could swallow foods properly. In physical therapy, he worked on leg, arm, and body exercises to build his muscle strength. They would use therapy balls during his sessions for different exercises. He went on a school bus when he was 18 months old for Early Intervention. This helped him get stronger and learn things, so he would be ready to go to Kindergarten 5 years later. He learned a lot of educational things while he was there.

He was also born with a hole in his heart, so six months after his birth he had open heart surgery. He was only 13 pounds at that time. He was in critical condition in the hospital for 3 weeks. Now he has a big scar on his stomach. When he was eleven months old, he had to get part of his lung removed. This was because he kept getting pneumonia after his heart surgery and it was getting caught up in his lungs. From this he has a diagonal, curved scar on his back by his shoulder.

John-John had another surgery, only this time it was on his head. For this surgery they cut the top of his head open, peeled his face down, and took some of the bones out and crushed them up and put them back in his face, and then they sewed his head back together. This was called Craniosynostosis, which means his coronal sutures in his skull were closing earlier than they should have. It did not give his brain a chance to grow and it caused his head to be lop-sided. They fixed this with the surgery. The next month his face was swelled up!

When he turned 1 year old, my parents threw him a huge 1st birthday party, to celebrate how many milestones he achieved, and to thank everyone for their support during this rough year. Every year John-John has to get blood and heart testing to make sure everything in his body is flowing smoothly. Last year my parents noticed he wasn't breathing for long chunks of time such as 27 seconds when he was sleeping. He has sleep apnea (so does my dad, but not as bad). So last summer he got part of his tongue removed. He can still talk, so don't worry! He got his tonsils and adenoids taken out when he was a baby. But his adenoids keep growing back so when he got part of his tongue removed he got his adenoids removed for the third time! He did not eat for two weeks because the pain was so strong and he lost 12 lbs in one week! But because he did not eat or drink for so long he got dehydrated and went back to the hospital in Cincinnati.

I think what has happened to him has made a giant impact on my family, because we live with someone who has gone through so much, yet he always has a giant smile across his face. Although he has many obstacles in life, they do not stop him from having a good time, learning, and getting active. He is who he is, and he knows that is how he will always be. He has taught me to be patient with my problems and to enjoy life. He has also taught me to not care about what other people think about you, because we are who we are.