'Seeing for Lelyn' community supports infant with rare disorder

By KBJR News 1

October 4, 2013 Updated Oct 4, 2013 at 10:48 PM CDT

Mercer, WI (NNCNOW.com) - Ask any parent, a new baby is both rewarding and challenging, but what happens when your newborn is diagnosed with a one in 10,000 genetic disorder.

One Wisconsin infant boy is seeing the world through the love and support of the community and the creativity of his family.

Seven-month-old Lelyn Schmidt is like most babies playing, eating and the occasional fuss.

But young Lelyn is one in a small number of babies born in the U.S., with a rare genetic disorder, Anophthalmia - the absence of both eyes, leaving him permanently blind from birth.

The diagnosis left the Schmidt family speechless.

"He'll never be able to see his parents, or his grandparents or his brother," said father Ken Schmidt.

"It felt like the whole world was caving in on you," said mother Stormi Schmidt.

With such a rare diagnosis and no pediatric eye doctors in their small Mercer Wisconsin community, the Schmidt's made the weekly 500 mile drive to Milwaukee to get treatment for their newborn.

They say the journey has paid off, and they're hoping one day being he'll fitted for prosthetic eyes, a necessity to keep his eyelids growing properly.

"July 15th was the first day he ever got his conformers in and at that time the size that they put in was 4 millimeters and the stretching process went really well and within six weeks he had three different sizes in, which is awesome," said Stormi Schmidt.

Now, the Schmidt's home is adorned with specially-designed equipment like an echolocation vision box, a tool to help Lelyn experience the world through textures and sounds.

"He's feeling the vibrations in his body, when he's in the box, he only plays."

Lelyn and the Schmidts aren't only adjusting to life through new treatments, but through the support of the community and social media.

People are raising awareness about Anophthalmia, while wearing and sharing their cause; "Seeing for Lelyn."

"They're seeing for Lelyn in a tree stand or they're seeing for Lelyn catching a muskie, or at the Packer game, there's been the coolest pictures sent of people wearing their bracelets."

And whatever the future has in store for their son, the Schmidt's say they're seeing a bright future for Lelyn.

A "Seeing for Lelyn" benefit dinner will be held on Saturday at 3 p.m., at the Manitowish Waters Community Center to help pay for treatment costs.

To follow Lelyn's journey click here.

Jeremy Brickley
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