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Carly’s Story

Early in the morning on September 14th, 2015, Carly woke up with a headache and light sensitivity in her eyes. After deciding to wear glasses instead of putting contacts in, she took the bus to school and tried to ignore the pain. But it became too much, and only about 30 minutes after arriving at school, Carly was at the nurse’s office being sent home. After going to urgent care later that night and being diagnosed with a corneal abrasion, she thought she would be back at school within the next week. However, after her ophthalmologist put a patch on her eye, it ulcerated and became an infection that left her blind in her right eye.

Carly was sent to Scheie where she met Dr. Wu, and eventually Dr. Orlin, her current ophthalmologist. Carly missed about six weeks of school for constant doctor appointments and hourly eye drops, and was home-schooled by two different teachers so she wouldn’t fall behind. After the infection was completely healed in January 2016, life went back to normal, or as normal as it could be with a scar over her right eye affecting her vision. Then, in February 2017, Carly was given the option of getting a transplant. After some deliberation, the next month on March 15th, 2017, Dr. Orlin performed a corneal transplant on Carly.

“The next morning when they took the patch off, my eye was the clearest it had been in two years” Carly said. “It was an amazing feeling to be able to see clearly again.”

Now fitted with a scleral lens 2 ½ years after transplant, Carly said there is nothing that she can’t do.

“I can wear any pair of sunglasses again, which is such a small thing to be excited about but I really am,” Carly said. “The little victories that I have won back after having my transplant make all the eye drops and the loose stitches worth it.”

Now, Carly is a junior at Saint Joseph’s University, where she studies International Relations and English. Currently working as a summer intern at Lions Eye Bank of Delaware Valley, Carly wants to stress the importance of signing up on the donor registry, and the impact that being an eye, tissue and organ donor can have.

“One person can save eight lives and benefit so many more, which is an amazing thing,” Carly said. “It is one of the most difficult decisions to make, but the impact is felt by recipients every single day.”

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Michael’s Story

For our next Favorite Friend Friday, we would like to introduce you to Michael and Kathleen Cruz. We first connected with Mr. Cruz when he reached out to his donor families with a letter of gratitude. Then, a few weeks ago the Cruzes came across Carly’s transplant story that was shared. Michael told us, “as a recipient I can tell you first hand that I am overwhelmed with gratitude to my donor’s family. I have been blessed with gifts from two great families. I can’t thank them enough for my sight. I can now see my garden, the flowers in my yard. I am truly grateful.” And we knew we had to learn more. This is Michael Cruz’s story, as told by his wife Kathleen:

Our story started around 4 years ago. Michael went in for his year eye exam. Our regular doctor detected something wrong with the cornea in both of his eyes, and referred us to a specialist. Lots of tests and visits later, things just kept getting worse. One day we were going down the shore when Michael said he had clouds in his eyes. Of course he did not tell me this until later.

My husband just retired from his role as a shipping supervisor for a glass company for 41 years. When his eye problems began, it was especially hard since most of his work was on the computer.

We made another appointment with the specialist, and were sent to Wills Eye. Immediately after this appointment, Michael was scheduled for cornea transplant surgery on his worse eye. We were scared, to say the least.

His first surgery was performed last November. It was an extremely long recovery. There was a lot of lying down, a lot of doing nothing, a lot of drops, and weekly appointments.

His second surgery was this past April, which was sooner than planned, but his condition was worsening. We felt much better this time, because we knew what to expect.

My husband loves his yard, his garden and flowers, his television, and all things nature. If he lost his ability to enjoy these things, it would have been terrible. I am the designer, and Michael makes things happen. We are a good team. I love to cook and bake, and now Michael is getting into baking too.

He is such a wonderful person who is always ready to help those in need. The loss of his sight would have been life changing for everyone. We are truly so blessed to have such wonderful doctors and donor families. We have learned so much through all of this. It is a miracle. Bless everyone involved. They all have given us a new and beautiful life.

 

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Recipient Turned Eye Bank Staff

This week’s Favorite Friend Friday is a slightly unconventional one, as I am not interviewing someone to be featured. The idea behind this new segment is to introduce the community to recipients, donor families, Lions, Board Members, staff, and constituents who make up and support the LEBDV family. Today I am going to introduce you to myself: my name is Alex Cummings, and I am the new Community Relations Coordinator here at Lions Eye Bank of Delaware Valley.

As the Community Relations Coordinator, I manage communication with recipients and donors, I assist with event planning, manage the social media platforms, run our eyeglass assist program, and a little bit of a lot of other things. One of my favorite parts of the job however, is this Favorite Friends Friday segment that I began. I know for me personally, hearing the stories of recipients whose lives were changed, and the stories of all the amazing LEBDV community members, is incredibly impactful. I love it because it allows me to meet and talk with inspiring human beings, and I am lucky enough to get to share their stories with all of you!

Before I go into any more detail of my own story, I should start off by explaining why exactly I took a job at Lions Eye Bank of Delaware Valley and why it is so important to me. Although I have only been working at LEBDV around 3 months now, my ties to them began over 4 years ago when I was 22 years old. I had just graduated from Tulane University in the spring of 2015, and was beginning my first full time job as an elementary school teacher in NYC.

I remember the exact moment I realized something was wrong as if it was yesterday. One evening I found small white dots on both of my eyes, and after a trip to urgent care when it was becoming difficult to see properly out of them, I found out that those white dots were cuts that had ulcerated, which in turn lead to an infection. The month of August 2015 was a blur of doctor visit, around the clock eye drops, and very little progress being made. When I think back to this time, the emotions of frustration and fear come rushing back. Frustration with the doctors who couldn’t help me, frustration with my body for letting me down, and fear that this was my new normal and I would never regain complete sight or independence.

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Young Girl Defies the Odds

This week we are featuring our youngest friend yet: (almost) 16 month old Mila Stier! Mila was our Cover Girl for our previous forSight newsletter, and her and her parents Megan and Luke have been involved with us ever since!

Mila has a very rare condition called Peter’s Anomaly—so rare that only 3-4 out of every 100,000 babies are born with it. Because this condition is so rare, there are so many unknowns surrounding it. Mila’s mom Megan explains that when her daughter was born at Pennsylvania Hospital, the onsite ophthalmologist who came in to check her eyes gave them very little hope. “She told us basically that there was no hope of ever doing a transplant on her left eye because it was too small and had a cataract. And if we did a transplant on her right eye, the most she’d ever be able to see is shadows and light.” You can imagine the panic and fear first-time parents would feel hearing that from a doctor. “She basically told us there’s no hope, don’t even bother.”

After countless hours of research and googling, Megan and Luke came across an Eye Bank in Kansas who had featured a little girl with Peters Anomaly on their website. Megan reached out to the Eye Bank asking to be put in contact with this mom. Megan recalls, “Her story sounded so much like my daughter’s, but her outcome sounded so much better!” Through this contact the Stiers eventually found Wills Eye, where their daughter’s vision was saved. “That’s why I really want to share our story,” Megan says, “because I feel like it could help people that might not know that Wills Eye is the best place to go around here for kids with PA.”

While Megan and Luke were presented with the option to have Mila’s right eye transplanted as well, they opted not to, as their doctor was able to remove some scar tissue to improve the vision. “For now we have decided to wait with her right eye. When she’s old enough, she’ll be able to decide if she wants a transplant,” Megan says. This past Monday Mila had to go back to Wills for another procedure—one that she has had done three times already, to remove a mass of lens cells that keeps coming back under her transplant. “Her doctors have never seen anything like this before,” Megan explains, “they still can’t be sure if all the cells were removed, but it looks hopeful.”

Today, 8 surgeries later, Mila is walking, running, and playing like any other 16 month old! October 17, less than two weeks from now, is actually the 1 year anniversary of her transplant! “Her vision surprises us every single day,” Megan remarks. “When she was born, we weren’t sure if she would even be able to walk or run around. It is so obvious now that she has a good amount of useable vision. She is able to see really tiny pieces of cookie crumbs off of the floor. Just the other day I had a tiny string on my pant leg, and Mila found it and pulled it. It was pretty incredible that she could see something so small!”

Through Lions Eye Bank, Wills Eye, and the internet, Megan and Luke have developed a support group of sorts of other parents of children with Peters Anomaly. “It’s really nice to have this support group of moms who can relate to what you’re going through.”

We are so grateful that Mila and her parents were brought into our life last year. They are an amazing addition to our community, and we love getting to watch Mila continue to grow and explore the world with her newfound vision.

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Mary Jackson Gets a Second Shot at Life

Mary Jackson didn’t just get new eyes – she got a whole new way of looking at life after a double cornea transplant 25 years ago cured her not only of blindness, but of suicidal depression.
Now in early 80s, she’s more active than she’s ever been and grateful for her second shot at life.

Going dark:
Mary was not yet 40 when she started having eye trouble in the 1970s. While working as a librarian at Thomas Jefferson High School in Richmond, she started experiencing double vision and problems reading as print looked blurry.
“I didn’t know the severity of what was happening,” she said. “They told me it was allergic conjunctivitis, which is just pink eye, plus atopic dermatitis. I didn’t know how serious it was.” The two conditions combined to leave Mary with untreatable failing vision and a huge problem for her career and lifestyle. “There I was as a librarian with a problem of this magnitude. I was also in the music ministry at my church so I had to be able to read the music and I was getting my master’s degree. And all of that while I’m going blind,” she said.

Even with rapidly failing vision, Mary earned a master’s degree from the University of Richmond in 15 months. But that was the high point. Four years later, in 1980, her vision had become too poor to continue working and she was forced to retire from her 22-year career as a librarian. “I was only 42 and I couldn’t work,” she said. “When school would start I’d really get depressed because I couldn’t go to work. I became suicidal and I’d have these pity parties every single day. No one was invited but my depression and my poor vision.”
Mary could still see a little – she could drive during the day as long as she knew the route well – but her vision continued to decline. She developed cataracts and her corneas became scarred. By the early 1990s, she could only drive to church and to Regency Mall – the only two places both close and familiar enough to navigate. “I became suicidal and I’d have these pity parties every single day. No one was invited but my depression and my poor vision.”

Risking it:
At church, Mary continued her work in the music ministry, memorizing the notes when she could no longer read them on the page. The pieces she couldn’t memorize, she rewrote “really really big” so she could see them.
But it was the depression, not her eyesight, that was the bigger problem. So when her doctor told her she could gamble on a cornea transplant, she decided to take a chance. “It was risky,” she said. “I could still see a little and the operation could have left me completely blind but I was going blind anyway. I figured blindness was going to be blindness so why not take a chance.”
The surgery was scheduled for Jan. 15, 1993 so Mary was completely unprepared when she arrived home in the evening to find a voice mail from the doctor saying a cornea was ready for her and the surgery had to be done the very next day. The chances of success were only 30 percent and Mary wasn’t ready but she went.

Signing up:
As she prepared for the surgery, she realized for the first time that she was being given someone else’s cornea – a gift of sight from a stranger who had signed an organ donation card. “I hadn’t been for or against being an organ donor. I didn’t know anything about it,” she said. But before she went in for surgery, she signed her own organ donor card. “When the doctor took the bandages from my eyes the next morning, it was like a new world.”

A new world:
There was only a 30 percent chance the transplant would work — but it worked. “When the doctor took the bandages from my eyes the next morning, it was like a new world,” she said. “The first thing I could see was the elation on his face because of the job he had done.”
Less than a year later, she had the same surgery again, this time on her right eye. Now entering the 25th year since her first new eye, Mary said she’s discovered a bigger world than the one she left. “I was taken out of the classroom but I was placed in a much wider arena than the classroom could ever hold,” she said.
She hit the road, traveling around the country and even to Australia with the American Baptist Women’s Ministries. She also began giving back to the donation community, talking to people who were candidates for cornea transplants and helping them through their fear.
“It became a passion of mine to talk to people who were candidates,” she said. “I talk to them on the phone or over email but when I was on the way to Australia I had to stop in Los Angeles and I got to have dinner with a woman I’d been communicating with over the phone.”

A medical miracle:
“I call transplantation a ‘medical miracle,’” Mary said. “I don’t have 20/20 vision but I don’t need to have 20/20 vision – I can read and I don’t take reading for granted. It’s a privilege.”
For a career librarian, being able to read again is everything. But it’s not all she’s doing, even as her 80th birthday approaches. “I’m on the board of the Old Dominion Eye Foundation and I’m the chair of Christian education at church and I teach Sunday school and I’m one of the editors of the church newsletter and I’m on several committees at church,” she said. She also found time to pose for calendars – one for Donate Life Virginia and one for the National Minority Organ Tissue Transplant Education Program. “I always say I’m a pin-up girl,” she said, laughing. She also says she’s been blessed with a second chance. “Suicide didn’t work because there was an opportunity waiting for me,” she said. “It always makes me think of the line in the hymn – twas blind but now I see.”

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Kacey Follow Up, Over Six Years After Her Transplant

Today’s Favorite Friend Friday highlights another one of our younger friends. You might remember Kacey Heisler from our 2015 issue of forSight. Kacey was just a baby when we featured her story and interviewed her family. Now all these years later, she is about to celebrate her sixth birthday on January 10, and we feel so lucky to get to watch this amazing young lady grow up!

When Kacey was born, her parents, Kristin and Kenny, noticed something different about her eyes. “Kacey wasn’t doing the normal eye movements that newborns do. When we took Kacey to her first month pediatrician appointment, her doctor recommended we see a specialist,” Kristin recalls.

Upon further examination at Wills Eye Hospital, pediatric ophthalmologist, Dr. Levin, determined that Kacey was born with a rare eye disease called Peter’s Anomaly. At only four months old, thanks to LEBDV’s Gratis Tissue Program, Kacey received a corneal transplant in each eye.

Fast forward over five and a half years later, and Kacey is getting ready for Winter Break as a Kindergarten student. And she has a lot to celebrate as this year comes to an end. Kacey was just awarded Student of the Month by her teacher Mrs. Agatone!

To celebrate Kacey and all of her accomplishments, here are a few fun facts about the soon-to-be six year old to get to know her a little better:

Her favorite class in school currently is Computer Class. She loves learning with ABC Mouse, an online educational platform. When she is not in school learning and exploring, she loves to spend time playing with her friends. Kacey and her big sister Kiley love to play Roblox together. Her favorite food is her Poppop’s Mac and Cheese, her favorite color is teal, and her favorite animals are bunnies “because they are so cute and furry.”

As a young infant born blind, Kacey’s parents had no idea what her future would look like. Thankfully today she is a bright, curious Kindergartner capable of doing absolutely whatever she sets her mind to. “Saying ‘yes’ to being an eye, tissue or organ donor is so important,” Kristin says. “It helps so many people, and it really is so much more than the gift of sight. You never know if or when someone you love might need it.”

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Daughter of a Lion Receives Sight-Saving Corneal Transplant

This week’s Favorite Friend Friday is a recipient we first met when she reached out to her donor’s family. Julie Hart, from Dowingtown, PA, is a mom of three and a software test engineer. Fittingly enough, she is also the daughter of Lion Charlie Hennessey from the Eagleville-Trooper Lions Club. Her life took a turn she would never forget in March of 2015.

“I scratched my cornea while using contacts which caused an ulcer in my eye,” Julie recalls. She started out at her local ophthalmologist but was soon referred to a corneal specialist in West Chester. Her regimen of constant eye drops continued to no avail, and was finally sent to Wills Eye Hospital in June 2015 where she was officially diagnosed with acanthamoeba, a rare corneal disease.

By the time Julie got to Wills Eye, the infection had been persisting for three months already. “I had no vision out of my left eye,” Julie remembers of that time. “Prior to my infection I was driving a school bus part time, but now I had to stay at home. I was so sensitive to light—I couldn’t go outside, be on the computer, watch TV. I no longer could do any of the things I used to enjoy. It was debilitating.”

Almost a year after the initial infection, in February of 2016, Julie received a cornea transplant in her left eye. Since then, she has been able to get back to a normal routine, spending time with her family and friends, and going back to work. We are all so excited to have her as our guest speaker at District 14-P’s Sight Night next month!

“Don’t hesitate to think about donating,” Julie says as she thinks about the selfless gift a stranger gave to her. “It is so valuable and so appreciated.”

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Long Time Eye Bank Volunteer Gets New Lease on Life

We are so honored to introduce Vicki Piccotti, an active part of LEBDV and a cornea transplant recipient, as this week’s Favorite Friend Friday! Vicki is a caring and compassionate individual which is exemplified through her dedication to her two children and life-long career as a registered nurse. Vicki worked for 45 years in various medical environments such as a senior care facility, a family practice and as a nurse at the school her children attended. Vicki is a talented skier and previously taught ski lessons at Shawnee Mountain. Currently, she is a part of Big Boulder Mountain’s ski patrol.

Vicki struggled with a virus infection in her left eye for many years and received consistent treatment for it. In 2011, she found out her cornea was so thin it could rupture, and had her first transplant scheduled within weeks. With no recovery issues, the first surgery went smoothly and her vision improved to 20/20 post surgery. A year later, Vicki had cataract surgery. In 2017, the infection came back, and Vicki had a partial transplant done; the second transplant proved to be a more difficult recovery, which led to Vicki’s third transplant in 2018. Although it was another challenging recovery process, serum tears—eye drops made from one’s own plasma—helped heal her eye after the third transplant.

Vicki is a strong and resilient woman who has embraced the challenges of her long transplant journey. There were many difficulties within her second and third transplant, but she did not let that affect her spirit. After her second transplant, Vicki went straight to Switzerland to ski the alps, despite having her eyelid glued shut for healing! Although she still struggles with her depth perception and driving in the dark, Vicki’s vision is mostly back to normal.

Vicki learned about Lion’s Eye Bank through her incredible eye surgeon, Dr. Hannush. After visiting the office for a tour, she was able to find information about her donor and saw the process come full circle. Vicki is so inspired by the incredible work accomplished at Lion’s Eye Bank and was especially impressed by the touching story of LEBDV providing cornea tissue to Simeon Edwards in Jamaica.

Vicki and her family try to support Lion’s Eye Bank whenever possible. She went to Salt Lake City in 2018 for the Transplant Games of America; the best part of Vicki’s experience was meeting people from around the world and across the country while spreading the positive effects that are the result of organ donation and transplantation. During the games, Vicki and her husband won six gol medals and two silver medals for ballroom dancing!

Understanding the importance of saying “yes” to organ donations, Vicki wants the community to know that although it is devastating when a loved one passes away, that person will live on by giving someone else the gift of sight or even life. Vicki is extremely grateful to her donor and her donor family for saying “yes” to donation during such a difficult time. Being a life-long health care worker, Vicki is certainly pro-donation and encourages everyone to speak up about eye, tissue and organ donation.

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Monday, August 12th, 2019