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zakruti.com » Blogs and People » Truly
My eye was pushed out of my skull - born different

My eye was pushed out of my skull - born different

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Rating: 4.0; Vote: 1
AMIT was born with Neurofibromatosis Type 1 - also known as NF1 - which causes tumours to grow uncontrollably on his nerves. Amit was two years old when his family noticed what they thought was a swelling on the left side of his face. As his tumours developed, Amit realised other children at school were staring at him and he had very few friends. He remembers coming back from school, just looking in the mirror thinking, 'Oh God, why me? ' By the time Amit was 11 years old, the tumours in his head were pushing his left eye out of his skull. Doctors recommended that he should have the eye removed, a surgery Amit remembers being daunting for an 11-year-old. Surgeons removed his eye and screwed magnets into his skull and jaw, allowing a bespoke prosthetic eye to click into Amit's eye socket. There is currently no cure for NF1, so Amit's tumours are always likely to regrow - in total, he has had 22 surgeries on his face alone. Securing an arranged marriage was always high on Amit's list of priorities, as he saw his siblings and other family members around him tying the knot. But he was faced with constant rejection - on one occasion he was asked by a member of another family: Would you want your daughter to marry someone like this? Being so blatantly disregarded took its toll on Amit, until one day his friend stepped in to play matchmaker and introduced him to Piyali. Amit and Piyali exchanged messages and got to know each other over video calls, all with Amit turning his face to one side to try and mask the extent of his visible difference. But Piyali told him: You're going to have to show me your full face because I'm not just going to marry half of your face. That's when Amit knew he'd met someone special. When Amit first asked Piyali to marry him, she said no, as her family had told her this cannot happen. But the pair had fallen for each other and eventually decided to move forward with the wedding regardless, with most of Piyali's family and friends absent. Since the wedding, though, Piyali's family have taken time to get to know Amit and are now much more supportive of the couple. However, Amit and Piyali do still face questions in the future, particularly around the 50% chance of Amit passing NF1 on to any children they might have. And while this worries Amit, he has a newfound purpose in raising awareness of his condition and advocating for people with visible differences. He recently started a TikTok channel and has gained over 60, 000
Date: 2023-09-12

Comments and reviews: 18


If they decide it's the right choice for them, I hope this loving couple can adopt a wonderful children. The adopted children would be so lucky to have these two people as their parents. I appreciate that Amit seems to have chosen not to have a biological child, because of the 50% chance of his child inheriting the health problems and physical pain that comes with his condition. Self esteem can be worked on and people can learn to be more tolerant, but that won't change the tumors, health complications, and need for so many surgeries. If they decide not to adopt, I hope they can be an awesome aunt and uncle.
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I respect him a lot for making a hard decision to not take the chance of passing that down because a 50-50 chance is a very high chance just knowing that he had to go through, and I really respect that they have to be a hard decision. A lot of people are just selfish and do what they want because they want a kid and they don-t think how the child might have to suffer. I respect him a lot for that!
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As far as not wanting to have a child that could possibly have the same, isn't there new technology where you can, with doctors, test which impregnated eggs may have the gene that causes it & which do not? I think it's like working with fertility doctors so multiple eggs can be made & can be determined. If the gene that causes the tumors can be pinpointed, it's something you should look into!
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It's cool that the guy isn't selfish and doesn't want his children (or grandchildren) to suffer like him.
There are people who doesn't care about it at all, as it -touches their ego- of not giving a birth to a child through own semen.
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I hate how people often judge somebody when they look -different- like why as an adult would you insult someone who can't help how they were born? We are all humans and should be treated the same.
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I love that you are sharing your experience with the world! I think we as an Ableist society, need to see the full spectrum of the human experience. So thank you for sharing! -
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I see a lot of people with some kind of deformity and I look at them for about 3 seconds and keep on. I don't care that you are different, I'm not going to disrespect you.
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I am sure you have family members back in India with the same genetic mutation. And that ur parents were prolly aware of it wen it showed up on ur face/body.
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God knew what he was doing and he made everyone just the way he wanted to and it's disgusting to think that not only kids but adults make rude and nasty comments
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Don't be sad. Emmanuel Macron, the French dictator, is better looking but he is married to a bony mummy. Your chick is 10, 000 times better than his.
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You are on an important mission, that will make a visible difference to the lives of many many people with visible differences. Carry on the good work.
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Amit, YOU are a bloody legend. Whoever said 'how will we show our family face' is disgusting. Total admiration. I think you're fabulous. -
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I would just wear a mask like in a movie Vanilla Sky or Eyes Wide Shut. it looks a lot better than having a fake eye.
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So are the tumors cancerous? Also I love his confidence and seems extremely down to earth. Keep going man and stay true -
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These videos are so inspiring. Much better than the fake Barbie wannabes full of plastic and low self-esteem.
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Good for you we are all born different and that is what is cool about it if we wear all the same life would be boring
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I've been paying attention to the things you've said, you're personality and fortitude makes you beautiful.
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Keep it pushing! Respect for your strength and determination and the challenges you have been through.
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