My baby has a bubble on her eyeball – people stare but I want to educate them about her rare disease

A mother has revealed her baby was born with extreme glaucoma, cataracts and no iris and has developed a “blister-like” protrusion on her eyeball.

Aspen Schuelke was born in March 2022, and doctors immediately noticed her eyes had a “cloudy” appearance, and five days later her diagnoses were confirmed, including aniridia – an eye condition that causes her to have no iris.

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After months of testing, it was confirmed in September that she has Axenfeld-Rieger Syndrome (ARS), a rare genetic condition that affects the eyes and other parts of the body, leaving the tot with little to no vision.

Aspen underwent multiple surgeries to relieve eye pressure and cataracts caused by glaucoma and an attempted corneal transplant when she was just a year old.

She has also developed a protruding scar “like an inflated balloon” due to the severe eye pressure at birth from glaucoma.

Despite her health struggles, mother Allison Schuelke, 25, says brave Aspen is doing fine.

“She’s happy and as healthy as she can be, all things considered, so it’s amazing to see her thriving after the challenge she overcame,” said Allison of Jackson, Michigan.

“She is so strong and has definitely made us stronger.”

The tot arrived via caesarean section on March 1, 2022, and little did the family know she would face health issues.

Allison said: “I was terrified of the unknown when doctors told me something was wrong.

“I was scared of what was going on with her and what it would mean for our family.”

Doctors confirmed the various diagnoses to Allison and her husband Michael, 33, shortly after the operation.

Allison, an inpatient rehab technician, said: “He said she was the second worst case he had ever seen and the vision prognosis was not good.

“I felt so down having glaucoma myself and I immediately blamed myself.”

In addition to her eye problems, doctors also found a hole in her heart and she later developed problems digesting food, which led to her having a gastric tube fitted in August.

To date, the plucky little one has had 20 hospital admissions for her various medical conditions and has more in the future, including a cornea transplant in June aimed at removing the scar.

Allison said: “The scar is similar to inflating a balloon and blowing too much air in it – if you let the air out the balloon stays stretched with white scars.

“It was scary at first to see the blister scar, but she is still our precious little girl.

“The typical first question we get [when people meet Aspen] is “what happened to her eyes?”. I’m just explaining that she was born with a rare eye disease and how it affects her.

“Treatment is difficult as there is no cure – only ways to improve their quality of life.”

“We hope for Aspen that the transplant works and that she is able to have more normal looking eyes – and a better chance of seeing.”

“But I am concerned that the surgery will not be completed again – although her scarring will not worsen. We have set up a second opinion team if the operation is not completed.”

ARS has also resulted in low muscle tone, and Aspen has yet to roll over or sit up unaided.

But despite all of her challenges, the cute tot is “thriving.”

Her mom has taken to TikTok to share videos of her daughter and to answer regularly asked questions about her condition, including confirming that tears come when Aspen cries and confirming that she doesn’t think she’s in pain.

Allison said, “I decided to share Aspen’s story online to help raise awareness about eye diseases. I think it’s important to help others, to know they’re not alone.”

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