- Associated Press - Saturday, December 31, 2016

WEST BEND, Wis. (AP) - Crawling to get a toy or staring out in wonder at the first snowfall should be no small task for a child, but for 2- year-old Eden Burgmeier these are recent accomplishments.

Eden was born with puffy, red eyes, which led to her being placed in the special observation wing. It was later discovered that she had Axenfeld-Reger syndrome. Her eyes were a cloudy white and her eye pressures were elevated - it was glaucoma.

From birth, about all she could see was light and shadows, which resulted in her not moving around or playing with toys.

“Glaucoma,” Eden said perfectly while being held by her dad, Andy, at their home in West Bend.

Andy Burgmeier, who has similar visual issues, said Eden’s “vocabulary is advanced for her age.”

Though she had little incentive to walk while blind, her vocal abilities and love of music flourished.

However, before Eden could talk, both Andy and Eden’s mom, Julie Burgmeier, felt devastated when they learned of Eden’s condition.

“So my kid’s not going to be able to see for the rest of her life,”

Julie said. “You just go to these places in your mind.”

It was a moment that tested their faith. They had a child who wouldn’t crawl and they now had to think about how they might teach her to walk one day. These feelings were fleeting for both parents.

“This doesn’t have to be devastating,” Julie said they realized.

The three went on a journey to find how they might give Eden the chance to see. After a little moving around to different doctors, they ended up with Dr. Yasmin Bradfield and Dr. Sarah Nehls at UW Health in Madison.

Eden needed surgery quickly so she could have a better chance of developing vision.

Bradfield said if Eden couldn’t see at a young enough age, her brain may not develop properly. Even if her eyes were fixed, Eden would not be able to see as well.

It was decided that a keratoprosthesis, or K-Pro, would be used alongside a laser treatment called endocyclophotocoagulation, or ECP.

The K-Pro is a prosthetic cornea made of an acrylic glass material.

It replaced the corneas Eden was born with.

This method offers a lower risk of rejection and can quickly improve vision in young patients like Eden in a predictable way.

“The use in children has been a very new application,” Nehls said.

Bradfield worked in tandem with Nehls and ECP treatment targeted eye fluid producing ciliary processes without damaging other parts of the eye.

The first surgery occurred in December 2015 with nearly immediate effects on Eden’s ability to move on her own and even interact in a more verbal manner.

After a few months of healing, Eden underwent a second surgery in the summer. As of the last vision test, Eden has 20/70 vision in her right eye and 20/120 in the left.

“Her confidence in getting around the house,” came quickly after the surgeries, Julie said.

Eden is now able to give her parents more typical problems, which leave them asking where she is and what her new explorations may have allowed her to get into.

“You’re prepared for moving things around, baby proofing.” Julie said. “For so long we didn’t need to do any of that.”

The immediate successes are exciting as she finds her toys and discovers the world around her - and there is an opportunity for more to come.

A hopeful Andy said, “She could have a (driver’s) license, granted, with restrictions.”

Bradfield said, “I’m very hopeful that she will get to 20/20 vision.”

Eden will need regular check-ups for the rest of her life with updates on her glasses, potentially more laser treatments and possibly tube shunts, a device used to drain fluid.

Both parents agree perseverance was key in coming this far, something they hope will inspire others.

When something happens, look into it, Julie said. “You never know what you might find.”


Information from: Daily News, https://www.gmtoday.com

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