International Albinism Awareness Day
1 in every 20,000 people worldwide are born with a form of albinism.
MERIDIAN, Miss. (WTOK) - When Marshall Smith was born, his parents, Mike and Jessica Smith, had no idea their little boy have would not only albinism, but the most severe form, Oculocutaneous Albinism. They didn’t learn of his diagnosis until he was four months old.
“It was a shock, I guess,” said Jessica. “Because we heard every negative thing, with knowing he’s going to have vision problems. We heard he’s going to be blind. We need to check into seeing-eye dogs. We need to check in the School for the Blind. It was terrifying.”
Albinism happens when the two parents have the albinism gene. When that happens, the child has a one in four chance of inheriting albinism. Jessica and Mike have one daughter together who did not inherit the gene.
When talking about Marshall’s diagnosis, Jessica said, “He has no pigment or melanin in his skin, which we have to keep to him, protected from sun exposure, bright lights. We have to have protection, sun, clothing, hats, sunscreen, glasses, everything. Everything you can do.”
In addition to monitoring Marshall’s exposure to light, they also must monitor his vision.
“Without glasses, he is legally blind,” said Jessica.
“That’s why I have the tablet that far away from me, so I can see good,” said Marshall, holding his hands close to his face to simulate a tablet.
Both Marshall’s skin and eyes are extremely sensitive to the sun and lights, which means even though he is legally blind, nighttime, when it’s dark, is when he thrives.
“Yes, surprisingly, he thrives at night,” said Jessica.
Marshall responded, “I guess I have night vision now.”
“He is as rambunctious as they come, mischievous as they come,” said Jessica. “He is a spring filled energy from the time he gets up till the time he goes to sleep.”
Medically, Marshall has to have regular check-ups with a dermatologist. He has an eye specialist he has to see twice a year. But other than the wide brim hats, the copious amounts of sunscreen, or the, as Marshall referred to it, “night vision”, he is a normal little boy. Life as an adult may be different from most adults for Marshall, but he’s still just a normal person. And that’s what his mom wants everyone to know about people with albinism.
“But it’s, you know, it’s just it’s a learning curve,” said Jessica. “But it’s not different. We just have to look at the sun a little different.”
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