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Nairaland Forum / Nairaland / General / Health / Meet Chris Alvarez, Oldest Man Living With Thanatophoric Condition (489 Views)
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Meet Chris Alvarez, Oldest Man Living With Thanatophoric Condition by LillyandDaisy: 7:31pm On May 26, 2022 |
Four years ago, when Chris Alvarez started ninth grade at the Henry Viscardi School, he already had his sights set on becoming high school valedictorian. “People underestimate me,” said Alvarez, 18. “Doctors told me I would die at age 5, but I’m still here. I want to continue to show people that they shouldn’t underestimate me because of my disability.” Alvarez began his journey at the Viscardi School, a school for students with severe physical disabilities in Albertson, in pre-K. At age 2, he was diagnosed with thanatophoric dysplasia Type 2, a severe condition causing skeletal underdevelopment in the chest, rib cage and limbs. His disorder has confined him to a wheelchair, and he uses a ventilator at all times to supply air to his lungs, which are also underdeveloped. Alvarez has lived longer than expected for people with this condition, and out of the six people in the world with this disorder, he is the second oldest. Even though being valedictorian of his graduating class had been a dream for many years, Alvarez said it was a surprise when he was officially announced as valedictorian. “I wasn’t expecting it,” he said. “There was tight competition, but luckily I got it.” For Alvarez, it was great honor to be able to represent his school in such a way. The most exciting part, he said, was being allowed to give a speech at his graduation. “He came to the school when he was almost a baby, and he has just blossomed,” said Jeanette Glover, clinical support services and admissions coordinater at the Viscardi School. “He had such a big personality that his disability is secondary. We are very proud of him for his academic achievements, but also for the young man he’s grown up to be.” Alvarez credits the Viscardi School for providing him and the other students with a proper academic education and also allowing them to become involved in extracurricular activities, such as basketball and student council. He graduated with a Regents diploma and was the captain of the school’s basketball team. “I never thought I was going to be able to get a ball in my hand, and obviously I was too short to touch the basketball hoop,” he said. “I always watched basketball, and I always wanted to do the same. This school gave me an opportunity to play.” To include students with different disabilities on the basketball team, the school provides three nets of varying height. While each player shoots at their level of ability, Alvarez notes that it is still very competitive and challenging. “Being part of the team was like being a part of another family because you get to know students that you don’t really talk to during a regular school day,” he said. “Since it’s hard for us to get around and meet up outside of school, it gave us an opportunity to share time together.” Alvarez also said that being a student at the Viscardi School has taught him many life lessons, such as how to persevere in difficult situations, there is something new to learn every day and sky is truly the limit. Alvarez said the biggest lesson he has learned is that people are the ones who create limits for themselves. These lessons have translated to Alvarez’s positive outlook on life and confidence, he said. “You never know when you’re going to go, and I live every day like its the last day with a smile on my face,” he said. “People who have it all don’t take advantage. I have no bones, I have no lungs, but I’m still here.” With all Alvarez has achieved so far, he said he has much more he would like to accomplish. He has been accepted at Adelphi University and will begin taking classes in the fall as a communications major and a student in the College Science Advancement Program. He has also been named as a finalist for a talent scholarship through Adelphi’s Department of Communications. Alvarez said he dreams of becoming a broadcast journalist, and at a young age he has already had significant experience in the field. Through an internship with a Spanish television channel, Alvarez has interviewed dozens of celebrities, many from the Hispanic community. Jennifer Lopez, Marc Anthony, Ricky Martin, Selena Gomez, Enrique Iglesias and Maroon 5 are among those Alvarez has interviewed. “My favorite part about journalism is getting to know different people and writing about different lifestyles and cultures,” he said. “I also enjoy seeing the way each person thinks about life.” As his journey at the Viscardi School comes to an end, it is clear to Alvarez that the school has had a great impact on his life, but according to staff, he has also affected the teachers, faculty, and students at the school. “He’s living proof that yes, he has a disability but we’re all the same,” said Kim Brussell, associate vice president of development and external relations. “Chris has a lot of confidence, but he is always thinking about others. He speaks well and is very motivated. He is a great model for other students at Viscardi. We will miss having him around.”
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Re: Meet Chris Alvarez, Oldest Man Living With Thanatophoric Condition by doggedfighter(f): 8:14pm On May 26, 2022 |
It can only be medical science. |
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