I Learn Library

A human library inspired by the stories in the film

Why Us?

By Gabriela Abad  |   From : Dominican Republic  |   School : Bloomfield High School

Manhattan, New York. December 15, 2016. That was the day that my dad decided to take my 2 month old baby brother  Brandon to the hospital because he believed that he had a flu. The doctors checked my brother and then they called us to come into a  dark old room. After they did some blood tests, they discovered that he had  something unusual about his flu. My brother didn’t have a flu, he had something worse, a respiratory syndrome called CCHS and they had to perform surgery on him. Then my step-mom a blonde, short woman who usually looked  strong, saw all the kids with different syndromes. She felt sad and worried about my brother. She went to my baby brother’s room at the hospital and burst into tears. My dad, a really tall man with dark eyes,did not  show emotions at that moment but later his worry and anger were eating him on the inside.

I came from Rhode Island to meet my brother, and I didn’t know how to react. I almost didn’t spend time with him because of the distance, and then, randomly, the doctor said that he was almost about to die. Also, I’m not very close to my dad’s family because of the distance between RI and NY. My family is really religious.  My grandmother who is my dad’s mom  prayed a lot for my brother to be a healthy baby. He is my first brother and the only boy in the family. I was devastated. My dad and stepmom said that my brother’s syndrome was caused by a gene.  The next day  I had to get back to Rhode Island. My entire ride was quiet. I was trying  to process everything that happened back in New York. I didn’t know if this syndrome would affect my brother’s life in the future.  Later they called me and said that Brandon had surgery and  that he was going to spend  a week in a coma. Again I went to New York to see him, but he was still in a coma.  I entered the hospital room, and  that’s when I saw my 2 month old little brother swollen because of all the anesthesia they had given him for surgery.. He had a lot of tubes in him. I felt sad when I saw him in that condition.

A month later he was transferred  to Blythedale Children’s Hospital  in Valhalla,NY which   specializes in  his syndrome. He was  there until he was 7 months. He finally went back to his house with a special bedroom. He has a  special crib that is connected to all sort of  tubes. He now only needs the machines at night and hopefully he will talk with some therapy. The doctor doesn’t know what caused this disease.With a tracheostomy, it’s difficult for kids to talk or even laugh. It’s hard for them but every time Brandon looks at my face he gives me this laugh showing me that there is nothing wrong. Brandon turned one three weeks ago, and he is still fighting.

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