This baby was hardly anything that resembled a human infant when he was born back in 2011. He was covered in scales, eyes crusted over, and it appeared he had been through some horrific accident. His Connecticut parents indeed were shocked as the baby couldn’t even open up his eyes, and wouldn’t be able to for weeks. He would end up spending two months receiving specialized care in the Intensive Care Unit.
The skin disease that baby Evan has is called ichthyosis. The skin will grow quickly and then builds scales, sticking together while constricting the baby’s movements. The scales have to be regularly removed, or else the child will die. Doctors told them that indeed, the disease was terminal and the child likely would not make it. But Evan was a fighter and the family had hope.
Now Evan is 5-years-old. His name is actually very appropriate as it means “the fighter”, a title clearly the young boy has earned. Every day has been a battle. Twice a day scales have to be softened up so they can be removed. But Evan, “the fighter”, hardly ever complains.
The quickly growing skin burns a ton of calories, so the parents need to make sure he get’s enough food to eat.
Evan’s motor skills have been affected by his skin, but he is a very clever young boy. He’s able to talk, but walking isn’t doable yet, so he has become quite the crawler! Even when his 19-month-old younger brother began walking, Evan only encouraged him and was proud of him. Not jealous or envious at all.
When Evan started school, his mother talked to the other classmates. She told them how Evan looks different from others. He is now considered a class “rockstar” and the kids treat him with respect and kindness!
Although there will always be those few who turn to the negative. He has been called “lobster” before due to his red skin and bald head. The family realizes this and doesn’t give it attention, but rather focuses on Evan and his day to day bravery.
He does risk infection greatly, yet Evan’s parents want to ensure he can live as normal of a life as possible. They are not hiding him or shielding him from all the things that every kid his age likes to engage in.
Evan and his brother love playing with one another, and are very gentle together.
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