The Gift of Sight: Celebrating Eye Donation Month
Alan Taylor, director of Tissue Services at Donor Network of Arizona (DNA), was in high school when he received the diagnosis that he was in early stages of keratoconus. Keratoconus occurs when your cornea becomes distorted, and in Taylor’s case, caused his vision in his left eye to eventually be nothing more than color and movement.
“I couldn’t see people. I would be virtually blind…it was like looking through a kaleidoscope.”
As an early intervention, Taylor was wearing bifocals in college, trying to read through his coursework and live his life like any other student.
Alan Taylor, director of tissue services at DNA, has 14+ years of eye banking experiences helping others get their vision back, like he did through donation.
In December 1995, he received his first cornea transplant. Immediately after the doctor took off the bandages on his healing eye, Taylor says he could see the details of the outlet on the wall across the room. Something so simple meant so much to him, and it was possible because a 19-year-old woman had given the gift of sight through cornea donation.
Fast forward nine years later, and Taylor was in a mountain bike accident that severely damaged his left eye. He ultimately needed a second cornea transplant.
“I was essentially a young guy, and [being visually impaired] made interactions with my family different. It was difficult because I knew I wasn’t present all the time. I didn’t participate as I should’ve.”
Thanks to the generosity of a 75-year-old man, Taylor’s vision was once again restored. After receiving his second transplant, he didn’t have those limitations that took time from his family.
“It changed my life and changed my son’s life, my children’s life.” Taylor’s journey with cornea donation is one of many stories and lives that have been changed for the better because of cornea donors.
“It’s a tremendous gift and I think about it on a daily basis.”
Cornea donation process
November is Eye Donation Month, and the cornea is one of the many tissues that can be a healing gift for someone in need. A cornea transplant involves the replacement of a diseased or scarred cornea with a cornea recovered from a donor.
DNA is a full-service eye bank, and works with ophthalmologists and surgeons locally, nationally and even internationally to help restore sight.
Luckily, there is not currently a waiting list for cornea transplants in the U.S., and most people have their cornea transplant within 30 days of needing it.
Not without its challenges
In 2020, we had toilet paper and hand sanitizer shortages. Years later, the domino effect hit less crucial items, such as carbon dioxide for carbonated beverages or the right ingredients for certain hot sauces. But the gift of life was not left out of supply chain issues.
The country was running out of a cornea preservation solution in 2022. In an era of scarcity, the DNA team was creative and resourceful, because organ, eye and tissue recipients depend on us every day.
DNA was so agile and vigilant that this cornea preservation solution shortage didn’t affect recipients. Our team even shared this vital resource with other eye banks struggling with similar limitations, so that they too could meet an ongoing need.
How you can help
Cornea donation is a life-changing procedure, and this process is possible because of the generous decision of donors. However, unlike cornea donation, there sadly aren’t enough organ donations to save the lives of everyone on the national waiting list. Yet! We have been working hard to change that. Each year, the country’s organ donation system gets closer to the 50,000 yearly transplant goal. That’s largely because we never lack support when it comes to our professional partnerships, the community, and the people who say yes to the gift of life.
We all may be in need of certain supplies, and face the challenges that this brings, but we have an abundance of hope to offer because we get so much of it from you. Registering to be a donor can help so many people who are awaiting a transplant, and lives are changed every day thanks to those who have registered. Register today at www.DonateLifeAZ.org.
Breast Reconstruction Awareness (BRA) Day
When Cait Kelley found a lump in her breast, her doctor assured her it was “probably nothing,” she says. After trusting her gut and demanding a mammogram, that lump became “definitely something” in the span of a week. She was diagnosed with stage 4 metastatic breast cancer at 33, a diagnosis that often comes with a three-to four-year prognosis.
As anyone can imagine, the news was concerning. She spent countless hours researching the cancer diagnosis and looking into clinical trials, treatment and more. Cait was prepared for the worst entering her appointment with her oncologist, breast surgeon and plastic surgeon. To her surprise, her doctors looked past the outdated statistics and instead, they saw an otherwise healthy 33-year-old woman and told her they were going to treat her with “curative intent,” essentially with recovery as an option.
Treatment with Curative Intent
Cait was treated with aggressive chemotherapy and surgery. She spent six months fighting through eight rounds of chemo and medication, and at the end of 2020, her tumor was miraculously gone.
Due to the fear of the cancer coming back, Cait was ready to get a double mastectomy with no reconstruction. When she stepped into her appointment with her plastic surgeon, he both validated her concerns and gave her all the options before she made her decision.
Decisions Based on Hope
Cait prayed to the universe to give her a sign on what decision to make. The night before she had to decide, she read a quote in “Becoming” by Michelle Obama that stood out to her: “Don’t ever make decisions based on fear. Make decisions based on hope and possibility.”
This brought her clarity, and on Dec. 29, 2020, a day before her 34th birthday, she had a double mastectomy with reconstruction.
Two years later, she’s happy with her decision because she feels physically and mentally improved. Because the doctors lead with hope, she is now declared NED (no evidence of disease).
Celebrating BRA Day
On Oct. 19, 2022, Donor Network of Arizona (DNA) celebrated Breast Reconstruction Awareness (BRA) Day by hosting an event where Cait shared her story with staff. BRA Day is a national observance designed to promote education, awareness and access to information regarding post-mastectomy breast reconstruction options.
Breast reconstruction is often made possible through the generosity of tissue donors. Just one tissue donor can help up to five people with reconstruction following mastectomy.
Cait received a life-changing gift of tissue, though not during her reconstruction surgery. In 2016, she underwent surgery to repair hip dysplasia, and thanks to a generous donor, was able to run again.
“I was sidelined from so many things, and that person gave me my life back,” said Cait.
We host events like these to make sure women and men of all ages have information on breast cancer and know what to look for during a self-examination. After Cait’s presentation, the afternoon continued with activities like making cards for patients with cancer, signing a pink ribbon in honor of a loved one and a fun photobooth to help spread this message across social media platforms.
To register as a tissue donor and give hope, please visit DonateLifeAZ.org.
Donate Life Day at the Diamondbacks
Donor Network of Arizona (DNA) celebrated Donate Life Day at the Arizona Diamondbacks game on July 9, 2022. The event was a huge success with over 2,500 tickets sold in our sections at the game. We invited donor families and recipients to celebrate the life of their loved one or honor their donor. Donation Champions and professional partners were also dressed in green and filled the stands. As guests walked into the stadium, they were greeted by a registration table, where they were able to sign up as organ, eye and tissue donors or reaffirm their decision.
Celebrating Life
Before the first pitch, more than 1,000 people with a donation connection lapped the diamond in matching green shirts while holding posters and photos of their loved ones in a Celebration of Life parade. In the stands were roughly 2,500 people in those same shirts during the game, the largest in-person event DNA’s ever held.
As the game started, Debbie Edenhofer, mother to a fallen Arizona Department of Public Safety trooper and generous donor, wound up on the pitcher’s mound to throw the first pitch.
“He was my hero,” Debbie says about her son, Trooper Tyler James Edenhofer. “I just feel like if I met [his recipients], I could see a piece of my son.”
For now, she holds onto his photo to encourage others to be a hero, too. Tyler suffered a gunshot wound after he responded to 911 calls of someone throwing stones at cars on I-10 near Avondale in 2018. Only 24, and engaged to be married, Tyler passed away. He donated tissue and corneas to heal others and restore vision for two people.
“I think everyone should be an organ donor,” Debbie says.
Recognizing Donation Heroes
Thanks to the generosity of Arizona donors, 790 lives were saved in 2021, and thousands more were healed.
Donor family members honored Stevie Pierce Jr. and Kyson Land, who both gave the generous gift of life to others. Double-lung recipient Allison Stokes, kidney recipient Tristan Black and his living donor Harmony Wells showed the lifesaving impact of donation. Also joining us on the field was a family who, due to a genetic condition, are all heart recipients, Adolfo Lopez, Adilene Lopez and their mother Guadalupe Aispuro. Finally, we recognized our donation champions, including employees at Motor Vehicle Division, driver’s license partners, Arizona hospital employees and others who make donation possible!
A Sea of Green
Ketchup wins! Two grandkids of Lynn Daily, donor mom to Jacob Daily, participated in the Hot Dog Derby.
“They were shocked at how many people would be watching them,” says Lynn. “But they are ‘Dailys’ and competitive, so they got over that quick!”
The kids were shown on the jumbotron along with the DNA sections where all of the donor families and friends, transplant recipients, living donors and champions of donation sat. The section looked like a bright green sea, due to all of the people wearing their Donate Life and Done Vida shirts provided by DNA.
Volunteers during the game loved the experience as well. Both registration tables were busy throughout the entire game, and more than 220 people registered for the first time during the event.
“I really liked the parade. It was very beautiful to see all the families together supporting each other and donation, it was very touching,” said volunteers Kaylynn and Carson. It was their first time volunteering for DNA and they are excited to come back for the next event.
Thank you to everyone who made this day possible and to everyone who participated and celebrated Donate Life Day at the Diamondbacks.
We all know lives are saved through donation. Moreover, the decision to donate not only multiplies compassion in our world, it creates a space for healing. Events like Donate Life Day at the Diamondbacks is just one of the many spaces where families are invited to heal during the months and years following the loss of a loved one. Hearts and minds open as people hear how the gift of life and health were so selflessly offered and how a donor’s legacy is remembered forever. Click here to see just some of the ways we help donor families navigate their journey.
We encourage everyone to register as an organ, eye and tissue donor to give a second chance at life. To register, visit DonateLifeAZ.org.
The Tummy Angel
Valen Krasnov was just 3 years old when his parents were told he was in liver failure and needed a transplant. The shocking news came after Valen and his father, Zaccarri, went on a camping trip and afterward noticed Valen’s eyes were almost completely yellow. He was admitted into the hospital in June 2021.
“We really thought we would bring him to the hospital, get some medicine and go home,” says his mother, Kelsey. Luckily, Valen matched and received a transplant within 12 hours of being put on the transplant list, an indication of just how sick he truly was.
“We’re so grateful we only waited 12 hours when others wait years,” said Zaccarri.
Now, more than a year after Valen’s transplant, “he’s doing really well, he’s really happy.” Since Valen was relatively healthy before his rapid illness and transplant, there’s been an adjustment period for the family as they get used to the changes that come with an organ transplant. Things are looking up as Valen, now 4 years old, is getting back into his routine and finally able to go swimming, which was a big goal of his.
“We think about [Valen’s donor] every day,” says Kelsey. They call his donor the “tummy angel” and are already thinking of ways to make family traditions to celebrate the donor and make sure they are remembered.
Kelsey and Zaccarri are looking forward to sending a letter to Valen’s donor’s family to express their gratitude for their selfless donation.
“I started writing some things out about what I want to say in our letter, there’s so much I want to say but there are not enough words, we are very grateful…We got a second chance with him,” explains Kelsey.
The mother of two is doing her part in encouraging people to register as organ, eye and tissue donors by explaining how it impacted her family. Recently, she was at the Arizona Department of Transportation Motor Vehicle Division when she realized a woman next to her was debating on checking the box to become an organ donor. “I told her Valen’s entire story, and she checked the box to become an organ donor.”
There are more than 106,000 people waiting on the transplant list, more than 1,500 in Arizona alone, and every person who becomes an organ donor gives hope to those who are still waiting. Thanks to the generosity of an organ donor, Valen received a second chance at life.
