Palmer family raises awareness about albinism
With such stark, blonde hair, 6-year-old Lyla Edgerton draws a lot of attention. People always have something to say about her long, curly locks.
“It gets kind of annoying, but yes, always,” Lyla said.
“There’s a lot of comments. ‘I would love to have hair like that, you look like Elsa, this is a real-life Elsa,’” her mom, Sarah Edgerton said.
Lyla’s 4-year-old brother, Lane, is also quite the tow-head.
Sarah uses their eye-catching appearance to educate people about their genetic condition called albinism.
“A lot of people say, ‘albino.’ But we have been working on saying 'a person with albinism' because a person is so much more than the condition that they carry,” Sarah said.
The National Organization of Albinism and Hypopigmentation calls it a rare condition, occurring about 1 in 20,000 people. The condition is usually passed on from recessive genes from both parents and affects the amount of pigment in a person's skin. Parents who carry the gene have a one in four chance of having a child with albinism. While Lyla and Lane inherited the condition, the Edgertons' third child, almost-2-year-old Landon, did not.
To protect themselves from the sun, the kids sport shades and hats and are always lathered in sunscreen. Albinism also impacts vision in a number of ways, which is why Lane and Lyla are learning to walk with canes and read through braille.
“I know a lot of the letters but it just kind of feels funny,” Lyla said. "I can’t do the whole alphabet, but I can do from A to I.”
Sarah said learning braille will help even the playing field with their peers if they have to give a presentation. Lyla also uses a video magnifier when she’s reading at home.
The kids can do almost everything their friends can but make a few modifications. Lyla said sometimes it’s hard being different.
“Some of my friends see better than us and it just doesn’t feel fair sometimes,” she said.
To show the kids the community cares, Sarah organized a walk for International Albinism Awareness Day. The event brought out the Schmidt family. Their oldest boy, Gavin, was born with albinism. Then the family adopted Micah, who also has albinism, from China.
“Gavin very much loves having a brother with white hair like him, as he says. And it means a lot to our family to open our home to children in need,” Tori Schmidt said.
Schmidt said their family embraced the condition after Gavin was diagnosed. His name is Welsh for “white hawk of battle.”
Both the Schmidt boys are legally blind but their mom said that won’t stop them from living their lives. They might need accommodations to help them, like canes or magnifiers, but she stressed they are normal kids who like the same things other kids like.
For these families, Thursday's walk is a way to grow awareness about the rare condition and break the stigma that goes with it. The more people know about it, the more they’ll be able to help kids as they navigate the challenges ahead.
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