Avery's Eyes: A Child's Journey From Long Island To Rochester

A Startling Diagnosis

Late one August night in 2024, Brittany Graham gave birth to her third child at a Long Island hospital. She and her husband, Kris, named their daughter Avery. She was perfect in every way, except that a nurse noticed something she had never seen before. A doctor called to the room diagnosed Avery with aniridia. The word aniridia means “without iris.”

Aniridia is a rare genetic condition in which the iris—the colored part of the eye—doesn’t develop correctly. It can be associated with non-eye-related problems or appear on its own. Aniridia is commonly associated with vision problems, including cataracts, glaucoma, and nystagmus, as well as the absence of an iris.

A Search for Answers Leads to Rochester

“As soon as I heard about Avery’s condition, I was on the internet,” said Kris. “I spent the entire night learning about her diagnosis and what we were facing.” He came across an hour-long recorded video interview with FEI’s Dr. Alex Levin, who sits on the Scientific Advisory Board of Aniridia North America. 

“It was very apparent from hearing him speak that this was the guy we needed to get Avery in front of,” said Kris. “I didn’t even realize he was in New York, albeit Rochester. I thought about the seven-hour car trip and thought it was doable.” Before Avery was a week old, she was in Levin’s exam room.

A Different Diagnosis

“I told the Grahams that this wasn’t aniridia,” said Levin.“Avery had congenital mydriasis, which is another rare condition in which the pupils are dilated and oftencunresponsive to light. It can look like aniridia, except the
iris is there and is normal; you just see less of it due to the pupil dilation. She also had congenital glaucoma.
The two can be linked to the same gene, but one doesn’t necessarily cause the other.”

According to FEI pediatric glaucoma specialist Dr. Matthew Haynie, congenital glaucoma can occur when the eye’s drainage system fails to develop correctly. This causes the normal fluid that circulates through the eye to back up, like a stopped drain, increasing pressure inside the eye. It can irreparably damage the optic nerve, resulting in vision loss or blindness. Avery’s eye pressure was four to five times higher than normal for infants.

Tiny Eyes, Complex Care

Before Avery reached one month old, Levin performed two surgeries called trabeculotomies. These procedures used precise incisions to increase the outflow of the blocked drainage system, restoring normal pressure. She was then put on an adjunctive therapy of eyedrops that help control pressure. The Grahams would make multiple trips to Rochester to monitor the progress of her glaucoma.

Avery remained stable for months until her pressure began to rise again, an unfortunately common occurrence in congenital glaucoma. To address this, Haynie performed additional procedures in which he implanted tiny devices, called Ahmed tubes, in Avery’s eyes. They lower pressure by creating a new pathway for fluid to drain from the eye. The devices have controlled pressure since then, and Avery’s vision function continues to do remarkably well.

Signs of Hope

To date, Avery’s vision is developing well. The Grahams describe her as recognizing people, feeding herself
Cheerios, and navigating her environment like any toddler. Occupational therapists also describe her as doing
amazingly well at visual tasks. “She’s doing great,” said Kris. “We’re optimistic about her vision. Until she can talk and tell us shapes and letters, we really don’t know exactly what she is seeing, but she is growing fast, and we should be able to find out soon.”

“We’ve performed tests in the office that suggest Avery has the potential for good functional vision,” said Haynie. “Glaucoma is a disease that damages the optic nerve connecting the brain to the eye. Under exam, her optic nerves look quite healthy. We won’t really know what level of vision loss she has experienced until she is old enough to demonstrate what she can see through more formal vision testing.”

Haynie says that Avery will always have glaucoma. But with early surgical intervention and pressure-lowering
eyedrops, he states that many children with congenital glaucoma can maintain good functional vision throughout
their lives.

A Birthday with a Bigger Purpose

During a February drive between Rochester and Long Island, an amazing idea was hatched, and Brittany discussed it with Kris during the trip home. “You know what I want to do for her first birthday? I want to throw a fundraiser. You know we have so many toys in our house. I don’t need any more stuff that’s worthless, so let’s throw a fundraiser and see where he (Levin) would donate it if it was his.” A quick call from the car confirmed it: ocular genetics—thereason for Avery’s mydriasis and glaucoma, and one of Levin’s core missions.

Turning Celebration into Impact

The couple quickly went to work, with Brittany taking the lead. The two of them had hundreds of personal and business contacts: Brittany is a paralegal, and Kris runs a certified public accounting firm specializing in
individual and small business clients. Donations for the auction poured in, while RSVPs for the party snowballed. Eventually, they posted the event on social media, which further fanned the flames.

On the day of the event, more than 300 people from over 10 states—as far as Nevada—turned out. Each was treated to a family-friendly birthday celebration. The party included face painting, bounce houses, festivities, and silent and live auction items.

“It was awesome to celebrate Avery’s birthday this way,” said Brittany. “We thought that if we could raise $10,000 to $15,000, it would be pretty cool. We couldn’t have dreamed that we’d have such an outpouring of generosity.”

Fueling the Future of Vision Science

When the confetti settled, nearly $100,000 was raised to benefit ocular genetics at Flaum with a big check presented to Dr. Levin. He plans to use the funds as part of his efforts to bring open-source, sight-saving gene therapy to patients with rare diseases, delivering it more affordably than through models in which patients may have to pay hundreds of thousands of dollars for treatment.

As an aside, his ocular genetics team was also able to solve the question of Avery’s eye disease. A mutation was found in the CYP1B1 gene. This led to a recent publication so that other doctors around the world can more easily recognize the condition and avoid confusing it with aniridia.

“I was blown away and am grateful for the generosity of the Grahams and their friends and family,” said Levin. “I would have loved to attend the party, but I was committed to attending an international meeting that weekend. I love my job, taking care of kids as a rare disease specialist. Things like this make it especially gratifying. I look forward to seeing the Grahams and being part of Avery’s care team as she grows into adulthood.”








 

Zachary Laird | 6/10/2026