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Tissue Donors Change Four Young Lives Forever

The gift of sight gives patients a brighter future”

Four young patients recently seen at the Illinois Eye and Ear Infirmary (IEEI), the patient care and education center of the UIC Department of Ophthalmology and Visual Sciences, were featured on a poster promoting National Eye Donor Month.  The Illinois Eye-Bank created the posters to encourage organ and tissue donation to help restore the sight of those in need.   Thanks to the gift of an organ/tissue donor and the skilled physicians at the IEEI, their young lives have been changed forever.

Catherine Jenks
Crissie Jenks’ daughter, Catherine, was just a toddler when she began to have vision problems. “She started running into things,” recalls Crissie. “She couldn’t see the faces of other kids and didn’t even recognize her own sister.” Catherine also had difficulty identifying household objects, even though they were large and close by.

In September 2007, at the age of two years old, Catherine was examined by Dr. Sandeep Jain, Director of UIC’s Corneal Neurobiology Laboratory. Both of her corneas were cloudy, which explained her impaired vision. “Based on a slit lamp biomicroscopy examination, we diagnosed her as having Congenital Hereditary Endothelial Dystrophy (CHED),” notes Dr. Jain.  In this condition, the cornea absorbs water due to the disease of the cells that line its back surface, causing the cornea to swell up and lose its transparency, thus impairing vision.

“Given that Catherine’s impaired vision was now affecting her development, the family consented to have us perform corneal transplantation in both eyes,” says Dr. Jain. The right eye was operated on in September 2008 and the left eye in January 2009.

Prior to surgery Catherine was barely able to see 20/200 during vision testing, indicating that her vision efficiency was just 20%. At her most recent visit she could see 20/30 with glasses, meaning that her vision is now at 90%.

Today Catherine is an active five year old. “She’s doing great,” says her mom Crissie. “She would have lost her sight without the organ/tissue donation. It has made a 100% difference in what her life would be. She’s a normal kid.”

Liliana Vujic
Liliana Vujic first came to see Dr. Elmer Tu, Director of Cornea Service, as a second opinion referral when she was just two weeks old. She was born with Peters Anomaly, a disorder that causes central corneal clouding, often with an attachment of the lens to the back of the cornea. She was afflicted in both eyes and her parents had been told that she needed immediate corneal transplants.  Corneal transplants, however, carry a high risk of rejection and failure in children.

Upon examination by Dr. Tu, he noted that one eye was more severe than the other and suggested dilating her pupil to allow her to see around the central cloudiness in the better eye. “Over the next several months she appeared to be delayed in her visual development, but she was making progress with the aid of visual therapy,” recalls Dr. Tu.

“We were so happy with Dr. Tu,” exclaims Liliana’s mother, Kimberly. “We had seen four other cornea surgeons. But we chose UIC and Dr. Tu because it was the best fit for our family.”

At around six months, however, Liliana began to develop searching movements of the eye, indicating that her visual progress was slowing. Dr. Tu elected to remove a portion of the iris in her left eye in January 2006 to give her a new pupil in the area of clearest cornea. The iris in her right eye was operated on in September 2009.

“At the age of four her right eye appeared to improve enough anatomically that we started to consider corneal transplantation,” notes Dr. Tu. After much consultation, a corneal transplant was performed on Liliana in April 2010. “She has regained some function in this eye over the past year and is able to make out colors and images. Challenges still remain ahead for this eye, but so far she has done well,” says Dr. Tu. Adds mom Kimberly, “Dr. Tu cannot believe how great she is doing with the corneal transplant. Liliana can navigate spaces very well and can tell an eye chart from 10 feet away. We’re amazed at how well she is doing.”

Kimberly points out that she wasn’t a donor before Liliana’s experience, and didn’t think much about it when getting her driver’s license renewed.  But she is a donor today. “Somebody helped my child and hopefully someday I can help someone else. A donation gave my daughter the opportunity to be able to see.”

Donovan Hopson
Three-year-old Donovan Hopson was also born with Peters Anomaly, which affected both of his corneas, although the right eye was more severe.

“We waited for him to grow a little bit until he was two or three months old, and then tried a rotational corneal transplant in the right eye,” says Dr. Ali Djalilian, Director of the Corneal Epithelial Biology and Tissue Engineering Laboratory. “This is where we take his own cornea and rotate it so the scar moves out of the center of the vision. We did this because we knew his chance of success with a regular corneal transplant would be very low.”

Unfortunately, the transplant did not work very long and within a few months it failed. At this point Dr. Djalilian asked Dr. Jose de la Cruz, Director of the Keratoprosthesis Program, to step in and he elected to perform an artificial cornea transplant in Donovan’s right eye when he was nine months old. This was very successful in helping to restore vision in the right eye, but recently Donovan required a second corneal transplant.

“Donovan is doing well,” says his mother Alicia. “He wouldn’t be able to see without the donor tissue. When you’re a donor, it opens up so many possibilities for families.”

Amaris Stokes
At four years old Amaris Stokes developed what her pediatrician thought was a severe case of pink eye. When a cataract was discovered in her right eye, Amaris’ parents took her to see Dr. Debra Goldstein, then director of UIC’s Uveitis Service. Just shy of her fifth birthday, Amaris was diagnosed with chronic uveitis, an inflammation that Dr. Golstein described as being akin to “arthritis of the eye.” According to Amaris’ mother, Crystal, Dr. Goldstein explained that the uveitis was treatable but not curable, and would require Amaris to take several different types of medication daily.

“Dr. Goldstein did all she could to keep Amaris’ eyesight,” recalls Crystal. Dr. Goldstein did five of the six eye surgeries that Amaris has undergone, with the first surgery at age five on her right eye.

In 2009 Amaris was diagnosed with glaucoma. Dr. Goldstein referred Amaris to UIC’s Dr. Jacob Wilensky, Director of Glaucoma Service, who performed a shunt procedure in November 2009. During this operation Amaris received donated sclera (eye white) tissue. Until Amaris’ parents were contacted earlier this year to invite their daughter to appear in the Illinois Eye-Bank poster, they didn’t realize that Amaris had been a recipient of donor tissue.

“We thought that it was just another surgery. We didn’t realize that Amaris had been donated tissue. We didn’t even have to be on a waiting list for a donor,” says Crystal.

As a result of her positive experience, Amaris has decided to write a book to spread the word about the importance of organ/tissue donation. She also reached out to her donor’s family with a poem titled The Gift of Sight, which reads in part:

With my eyes I can see
This most precious gift your loved one gave to me
They didn’t know me from anyone else
But what they gave to me values more than wealth

Notes Crystal, “Amaris lost very little sight, but enough to be a voice and an advocate for a great cause.”

Today Amaris is a busy 12-year-old girl who is on her school’s honor roll and recently placed as a runner-up at the Miss Pre-Teen Chicago pageant, snagging the Most Photogenic award. Crystal points out that one day Amaris hopes to help someone else with an organ donation. “It’s a blessing to have people who are willing to donate,” says Crystal.

For information about eye tissue donation, go to www.illinoiseyebank.org. Or join the Illinois Organ/Tissue Donor Registry at www.lifegoeson.com.

 

by Margaret Doyle

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