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Sairah Grace Casto-Hodge’s story…

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This story is written in the words of someone with CHD…

My name is Sairah Grace Casto-Hodge. I am 18 years old. I was born with a congenital heart defect called Transposition of the greater arteries & pulmonary stenosis.

My mom said that her pregnancy went fine and that the doctors said I was healthy and a good size. Then on October 19, 1992 at 6:57pm I was born and within 2 hours they told my family I was turning blue and I had something wrong with my heart. They transported me to Long Island Jewish Hospital in New York. There is where the Cardiologist decided I needed open heart surgery. Dr. Joseph Amato was my Pediatric Cardiologic surgeon. My family said he was an amazing Doctor and he was very caring and gave my parents lots of information and so when I was 7 days old I had the open heart surgery called the Switch, which took 10 hours in the operating room. I was given a 50/50 chance and I was not promised tomorrow.

My years growing up I have had a few heart caths, balloons and stints. I had my 2nd open heart surgery in April of 2008. So I did not finish my freshman year. One of the common sides affects of having a heart condition and having open heart surgery is Scoliosis of the spine. They say due to the fact of the heart and also ribs being cracked that it pulls you forward. I had to wear a full time back brace. Then I had to have 2 spinal fusion surgeries in 2009 and now I have 2 rods in my spine and 24 screws. I had the first spine surgery with 2 rods 18 screws in Aug. of 2009, but then due to complications I had to have another spine surgery which left me now with 2 rods and 24 screws and only 2 discs left in my back. This caused me to miss the first half of my junior year. I always seem to get sick easily so I miss a lot of school, but I push to stay on top of things. As far as my heart I still have issues, but I do not let it stand in my way. With medication and my desire to be strong and never give up I enjoy life.

My family is a very important part of my life. My parents are always by my side when I go through all my medical issues. I also have a 10 year old sister, Sierra who calls me her hero, because she says I am a fighter and she is proud to be my sister. Even at school my sister did a report on me. I sometimes feel bad that I take my parents away from her when I am in the hospital, but she understands and we have a close bond. I love her to pieces.

I am a senior at Orange Park High School. My future goal is to be a trauma nurse in a pediatric hospital or sports medicine. I love working with children and I want to be able to help them heal and also I will be able to understand what they are going through. It is hard for children with medical conditions, especially for teenagers. I can give them support in different ways.

My family and I are very actively involved with different organizations in my area. I am a part of Mended Little Hearts, Starlight Children’s Foundation, American Heart Assoc., Dreams Come True and Songs of Love. We are active members because I am a teenager that was born with a congenital heart defect and I am also involved by doing community service for them. I am a singer and I sing a lot for the community by singing the National Anthem for different organizations and I also do concerts. I did my very own concert at the local Fair this year. I even got to be one of the opening singing acts for the country singer “Linda Davis”, who happens to be the mother of Hilary Scott from Lady Antebellum. So I opened for Linda Davis and then had lunch with Linda Davis and Hilary Scott. It was amazing.

I also just found out that the American Heart Association made me the face of the First Coast for the “Go Red” the fight against heart disease for 2011. I will have to speak at events, be in a fashion show and go for a photo shoot so I can be on the advertisement for Go Red. I am so honored and excited because I want EVERYONE in the world to under stand how important the fight for heart disease is.

Another way I have tried to help others is for my Sweet 16 and my 18th Birthday they were Birthday Parties that were also a fundraiser for Dreams Come True and instead of people bringing gifts they donated to Dreams Come True in my honor and 2 little girls that were also born with CHD benefited from my parties. It made me feel so good to see the smiles on these little girls when they had their Dreams.

I love to hang out with my family and friends. I enjoy going shopping, watching movies and I love to sing. Did I mention I love to shop???

My advice to all CHD children and their families is to be a kid. Unless the Doctors say you can NOT do something, then do NOT sit back and waste life away. Enjoy it and live it to the fullest. I have done many sports. I have figured skated for 5 years and I am a singer. I have future plans to be in the medical field. This is how my parents raised me. They told me “I was never promised tomorrow, so live and enjoy life today”. I live outside the bubble.

God Bless you all.

Sairah Grace Casto-Hodge

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