ENHANCING LIFE FROM THE EYES

Four-year-old Elliana is a sweet, curious girl who loves dancing and listening to music (particularly The Beatles), playing hide and seek, and exploring with flashlights. She is growing up in Rochester, NY, with her parents Stephanie and Dominic and little sister Gabriella.

Born two months early, Elliana spent 32 days in the neonatal intensive care unit. During this time, doctors noticed that her eyes appeared clouded, and were unsure if she would ever be able to see. At just 3 days old, Elliana was diagnosed with a rare eye disease called Peters anomaly. “We had never heard about Peters anomaly before,” Stephanie said. The new parents were left feeling devastated and with more questions than answers.

The first few months were a whirlwind. “We started researching everything we could,” Stephanie recalled. “Dom spent hours reading scholarly articles, searching social media and reaching out to doctors across the country to gather opinions. We wanted to be as knowledgeable as possible if we were going to be making decisions for our daughter.”

Thanks to the power of social media, Dom and Stephanie were able to connect with a support group of parents of children with Peters anomaly. From that group, they learned of many different procedures, outcomes and specialists.

One family in particular reached out to Dom regarding their experience, and through that referral he connected with Alex Levin, MD, Chief of the Wills Eye Pediatric Ophthalmology and Ocular Genetics Service.

In August of 2017, the family traveled more than six hours from Rochester, NY, to Philadelphia, PA, to meet with Dr. Levin and Christopher Rapuano, MD, Chief of the Wills Eye Cornea Service. “Our doctors were amazing,” said Stephanie. “They answered all of our questions and were open and honest with us about the benefits and risks associated with bilateral cornea transplants. However, we left that day still feeling very overwhelmed and worried for Elliana’s future.” Peters anomaly is rare and each case is unique, but both doctors felt the best chance for vision was cornea transplants. Ultimately, Dom and Stephanie agreed. “Eye and vision issues at an early age can lead to delays in childhood development,” explained Dr. Rapuano. “It is imperative to correct problems early on to ensure babies develop the visual abilities they need to learn and grow.”

On December 13, 2017, just shy of 7 months old, Elliana had a cornea transplant on her left eye, and on April 4, 2018, Elliana underwent cornea transplant surgery for her right eye. Thankfully, both of Elliana’s transplants were successful. She has had many visits to Wills Eye Hospital and subsequent surgeries since. Although her vision continues to change, her parents feel validated every day by their decision. “She can look at her parents and call us ‘Mom’ and ‘Dad,’” gushed Stephanie. “When she was born, we didn’t think that would be possible.”

“We wish we could go back in time and tell ourselves that it’s all going to be okay,” Stephanie said of the progress they’ve made. “It’s so comforting knowing we made the right decision. Elliana can pick up a book and tell you which one it is. She can identify her colors, shapes and some letters. She can even pick up a family picture and tell you who’s in it!”

The family has since made countless trips back and forth to Philadelphia, and even though it’s logistically very challenging, they are reminded daily of the incredible gift Elliana has been given. Stephanie and Dom are beyond grateful for their talented Wills Eye specialists, Lions Eye Bank of Delaware Valley (LEBDV) and especially Elliana’s two cornea donors, whose selfless gift allowed her to see the world for the very first time. “The gravity of what had to happen for our daughter to be able to see is not lost on us,” Stephanie said. “We say a prayer with Elliana every night and thank her donors. Without them and their families, none of this would be possible—through the tragedy of a life lost, a little girl can now see. Elliana has the gift of sight, and words will never adequately express the amount of gratitude we have for her donors, her doctors and LEBDV for all they’ve done.”

“Receiving a cornea transplant in my left eye has changed my life forever,” says Akash Sethi, DO. “Vision is something often taken for granted, until you have to live without it. Because of my transplant, I had the blessing of witnessing the births of my two children with crystal clear vision.”

Born and raised in West Chester, Pennsylvania, Akash lives and works in the Philadelphia area with his wife, Seema, their five-year-old son, Niam and their two-year old son, Neal. As a nephrologist, Dr. Sethi knows good vision is crucial to care for his patients. “Working on the computer and reading small print wouldn’t be possible without my transplant.”

For many years, Akash suffered from Keratoconus, an eye disease that weakened the fibers in his left eye, causing severely blurred vision. “I struggled with my vision throughout college, but being young, I didn’t understand the severity of the disease, until it became unmanageable.”

Once in medical school, Akash realized that the Keratoconus in his left eye was drastically interfering with his quality of life. He tried everything from glasses to hard contacts, but nothing worked and he found himself planning activities around his eyes. “It was awful. Although hard contacts helped my vision, I couldn’t wear them for long, which made simple tasks like watching TV, or reading books nearly impossible,” Akash recalls.

“I knew a cornea transplant was the path I needed to take to restore my quality of life, but I was too nervous at first,” says Akash. “My surgeon at Penn Medicine, Stephen E. Orlin, MD, made me feel comfortable and at ease; he reassured me it was the necessary next step to regain my quality of life.”

“My cornea transplant has given me my life back. From time with my family and patients to my love of tennis and basketball, every aspect of my life has drastically improved. I am so thankful for my cornea donor and for the work of Lions Eye Bank of Delaware Valley. I will always advocate for donation; it has changed my life for the better in so many ways.”

Not only was Althea Fogle a dedicated employee who helped heal lives in the community for more than 30 years at AltruVision, she is also the mother to Tiffany, a cornea donor who passed away tragically.

Tiffany was an extraordinary young woman, known for her memorable spirit, motivating personality and strong faith. An active student, she graduated from West Philadelphia High School with a resume full of accomplishments, including being named homecoming queen and elected class secretary.

After Tiffany passed away, Althea’s family was heartbroken. While they were unable to donate Tiffany’s organs, the decision to donate her eyes, bone and tissue was a given.

“Everyone at the Eye Bank watched Tiffany grow up. She was very familiar with the work we do, and she felt strongly about giving back. I knew we could donate her corneas and help to restore the vision of two individuals. We learned that her cornea recipients were seeing clearly and their lives were improved. It brought tears to my eyes and I thought to myself, what a beautiful legacy she’s passed on,” said Althea.

“Tiffany’s life wasn’t just a blessing to her family and the recipients who received her gift,” Althea explained. “She left a mark on many. When she passed on, the Cheyney community came together in ways we couldn’t imagine: holding candlelight vigils, busing students to her service and even presenting her an honorary BS degree in May 2013. I am so proud to say that Tiffany accomplished more in her short life than many ever will. She continues to live through the people she has helped—her family, her friends, her peers and her corneal recipients.”

Each morning, Tamikya and Wyatt prepare their six school-age children for the day. “We focus on keeping a structured routine,” Wyatt says. “Balancing it all takes a lot of attention,” adds Tamikya.

The family routine had to adjust after their son, Cameron, was diagnosed with keratoconus. At just three years old, Cameron began experiencing vision complications. Keratoconus is a disease that affects the cornea, which is the clear, dome-shaped tissue covering the front of the eye. Keratoconus results when the cornea’s dome bulges outward into the shape of a cone.

Although vision was a constant struggle, Cameron always worked hard and did his best. He achieved the narrator role in his school’s Shakespearean play, “Twelfth Night.” “It was not easy to see or read,” he says. “It was difficult to see things close but even

worse to see at a distance.” Cameron’s initial treatment for keratoconus was wearing eyeglasses to correct his sight, followed by special contacts. At 13 years old, Cameron was told he needed a corneal transplant.

Cameron remembers feeling nervous and scared. His physician explained each step of surgery, which lightened some of his fears. His family was also very supportive. After a successful transplant, Cameron’s father was pleased that he missed minimal school days and returned to most activities within six months.

A smiling Cameron says, “Because of the surgery, I liked that I got everything I wanted!” Cameron pays his gratitude forward. He received school commendations for character and acts of kindness. He presently volunteers as a junior varsity assistant football coach for a local Catholic youth league. Cameron and his family express eternal gratitude to the donor who made the selfless decision to donate their cornea. “Being a cornea and organ donor is so important. My donor now lives on through me,” Cameron says.