Genetic eye disease leaves young brothers from Sibley legally blind

Jan. 11—SIBLEY, Iowa. — A year ago, brothers Andrew Larson and Lincoln Croatt of Sibley were typical young boys who loved to play soccer and baseball, ride their bikes to the swimming pool and go to the movies.

A lot can happen in a year, though, and it did for these active and outdoors-loving brothers who are now learning to live with a hereditary eye disease that has nearly stolen their vision.

Twelve-year-old Andrew and nine-year-old Lincoln were diagnosed with Leber Hereditary Optic Neuropathy, an eye disease that has left both boys legally blind. Andrew, who has seen numerous eye doctors and specialists since his vision began to deteriorate as a third grader, was initially diagnosed by Dr. Jill Kunzman at Sibley Eye Care, and the disease was ultimately confirmed by the Mayo Clinic in Rochester.

Because the eye disease is hereditary, Mayo requested the entire family be tested, shared the boys' mom, Alana Croatt. The tests revealed Alana was a carrier of the gene, and that Lincoln had a 50% chance of getting LHON, while Alana's two daughters have a 10% chance the eye disease will impact them. There is no cure or treatment for the eye disease.

"It came back as mitochondrial DNA, passed from the mother," Alana said. "They said it was a genetic mutation."

At the time of Andrew's diagnosis, his visual acuity was 20/200 in one eye and 20/180 in the other. Lincoln began to experience vision loss late in his second grade year.

"In March (2022), he was 20/20 in both eyes," Alana said. "In May, one eye went to 20/125 and the other was 20/20; and in August, (his left eye) went to 20/600 and he just had light perception in the other eye."

Doctors at Mayo Clinic told the Croatts that the impact to the eyes tends to level out after about two years from diagnosis. That means Andrew's vision should remain at about 20/200, and Lincoln's vision could experience more changes within the next year.

"We're hoping it could improve, but if it does, it won't be very much," Alana added.

Lincoln will continue to go to Mayo Clinic for check-ups every six months until after his second year with the eye disease. Then, like Andrew, they will see doctors at Mayo Clinic annually.

With LHON, the optic nerve doesn't receive enough blood flow, causing damage to the nerve. The genetic disease is more common in males, and usually begins to cause vision loss in individuals in their late teens or early 20s.

Andrew and Lincoln were both nine when their vision loss began. Their younger sister, Savannah, is seven, and older sister, Makayla Dale, is 23. Through testing, it was discovered both are carriers of the gene. Makayla has already completed genetic counseling, Alana shared, as the eye disease could be passed on to her future children.

In addition, the family joined a research program at the Mayo Clinic. Alana said they each had a skin biopsy done. Researchers will examine the cells and take their skin sample back to the embryonic stage in hopes of repairing the genetic mutation.

Alana and her husband, Jeremy Croatt, continue to adapt their Sibley home to help their sons. Toothbrushes must be kept in the same spot, raised bumps were added to the microwave so the boys could make popcorn, and their friends in school were instructed to approach Andrew and Lincoln and say their name, as the boys can't see well enough to find their friends on the playground.

"They used to be very independent — going to the park by themselves and going to the pool by themselves," Alana shared. "Now, they can't see the cars; they can't tell who's around them."

As parents, they see the disappointment in their boys who miss playing soccer, watching TV, going to the movies — even dialing a phone number because everything is touch-screen nowadays.

For Lincoln, his family lets him know what room they are in because he can't see them.

It's been a big adjustment for everyone.

"There's been good days and bad days," Alana said. "Some days they don't want to go to school. They don't like the attention or they get overwhelmed with all of the questions."

Lincoln, who'd successfully learned to read and write before his vision deteriorated, has complained that he has to relearn everything in braille.

"They even have to learn a new kind of math system," Alana said, adding that Lincoln is learning braille and has a paraprofessional working with him all day at Sibley Public School.

Andrew, who transferred to Worthington Middle School at the start of the school year, has also had changes in his learning. However, since his vision isn't as bad as his brother's, his education is more technology-based.

"They are working on keyboarding ... and audio things that can help him," Alana said.

While the boys have access to special technology while in school, that isn't the case at home.

Both have canes, which they are using for mobility training, but they aren't needed as much at home because it's a familiar place for the boys.

Although, shared Alana with a laugh, she and Jeremy have to make sure they're not using them as swords or light sabers around the house. Yes, they are still typical boys.

There are other learning tools they'd like to have. At the schools, the boys have special magnifiers and a Cloverbook to see the board, enlarge their books and see what they are writing on their paper.

"For them to do drawings or read a book, we can't do that at home," Alana said.

She'd like to get a brailler, a braille computer that will translate printed material like worksheets into braille for Lincoln. It can also do the reverse, if Lincoln types in braille, it will print out in text form for his parents and teachers.

In Iowa, braillers are available through a state program to loan to students, but the equipment stays at the school.

Alana said that as Lincoln learns braille, the rest of the family is trying to learn it as well. And, they are finding things to do together as a family like playing trivia games or listening to stand-up comedy, neither of which require vision.

Andrew will attend a technology camp this summer in Duluth, at which Alana hopes they can learn more about tech options to help their sons.

"We are looking into a tandem bike to go on bike rides again," she added. "Right now, those are the goals — the brailler and the tandem bikes."

The Zion Lutheran Church youth group of Ocheyedan has started a fundraiser for the Croatts to eventually be able to purchase a brailler — and perhaps tandem bikes.

The group received some seed money from Thrivent for a mission project that involves selling Casey's pizza punch cards. Each card contains 10 punches, and each punch is good for one free medium single-topping pizza with the purchase of any large specialty pizza. The punch cards are $20 each, and expire on Aug. 31, 2024. They are accepted at all Casey's General Store locations that serve pizza, but are not valid with delivery or online payment.

To purchase a card, contact Marilee Grimes at (712) 754-3997 and leave a message with your name and phone number. The cards must be paid for with cash, and the proceeds will go to the Croatts. Free-will donations are also accepted.