Timely Clinical Management Yields Good Vision in Retinopathy of Prematurity

Vascular Endothelial Growth Factor in Pediatric Retinal Disease Vascular endothelial growth factor, or VEGF, has become extremely important in the management of both adult and pediatric retinal diseases. Anti-VEGF drugs have revolutionized treatments for age-related macular degeneration. The vascular endothelial growth factor molecule also plays a very significant role in pediatric retinal diseases such as retinopathy of prematurity and familial exudative vitreoretinopathy. Although several FDA approved and non-FDA trials of anti-VEGF drugs have been carried out in age-related macular degeneration and diabetic retinopathy, to date, no organized, prospective, randomized clinical trial has been carried out in pediatric retinal diseases. ROPARD has funded a study called Block-ROP, which is a multi-centered clinical trial that will test the use of the anti-VEGF drug,Avastin, in retinopathy of prematurity. This study will be carried out at eleven centers throughout the United States and Canada and within the next two years should generate clinically useful data with respect to the use of anti-VEGF therapy,Avastin, in retinopathy of prematurity. Although there has been anecdotal reports of the use of this drug throughout the world, no study of this weight has been carried out. Fifth Children’s Vision Award The recipient of the fifth Children’s Vision Award will be honored on Saturday May 31, 2008 at the Detroit Institute of Arts, Detroit, Michigan. Mark your calendar and plan to attend the Children’s Vision Award ceremony. ROPARD Lecture Series On April 28, 2007, Dr. Carol Shields spoke on Pediatric Retinal Tumors at the ROPARD Lecture Series. THE ASSOCIATION FOR RETINOPATHY OF PREMATURITY AND RELATED DISEASES

Board of Directors

John Baker, M.D. Antonio Capone, Jr., M.D. Margaret Cooney Casey Richard T. Chapman Patrick J. Droste, M.D. Philip Hessburg, M.D. David S. Hooker Leslie Hooker Jeffrey Maisels, M.D. Raymond Margherio, M.D.

(1939-2000)

Rita Margherio Kay White Meyer Edward O’Malley, M.D. Venkat Reddy, Ph.D. Caron Trese Ted Wasson Lori Webb Goerge A. Williams, M.D. Kimberly Williams Paul R. Ziegler

Michael Trese, M.D.

Medical Director

Susan Campbell

Administrative Director

Paula Korelitz

Outreach Director

Children's Low Vision Resource Center

By Appointment Only

Paula Korelitz

Outreach Director

Rosemary Blaszkiewicz

Parent Advisor

4064C W. 13 Mile Road Royal Oak, Michigan 48073 1-800-788-2020

ropard@yahoo.com

ROPARD has available for parents, family and professionals many items that are useful for the development of children with retinopathy of prematurity and low vision.

Video l: Management of Retinopathy of Prematurity (VHS or PAL format) $30 Video ll: Retinopathy of Prematurity, Current Issues (VHS or PAL format) $30 Videos l and ll $55 Booklet: “Looking Ahead:A Parent’s Guide to the Development of their Child with Retinopathy of Prematurity” $10 Brochures: “A Parent’s Guide to Their Premature Infant’s Eyes” Pkg of 100--$25. (available in English or Spanish)

Holiday Cards

Don’t forget to order your Holiday Cards!

Package of 12 for $15. They are also available in Braille for $22. Custom imprinting upon request.

Order at www.ROPARD.org; or call 1-800-788-2020.

ROPARD is an association dedicated to eliminating the problems of low vision and blindness in children caused by premature birth and retinal diseases.

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Susan Campbell,

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Editor

ROPARD, P.O. Box 250425, Franklin, Michigan 48025

Paula Korelitz,

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July 2007 The Newsletter of ROPARD

A Tale of Love and a Gift with a Tail

By Bill Lohmann,Times-Dispatch Staff Writer, © Richmond Times Dispatch, Tuesday, February 6, 2007 used with permission.

Kimmie and her dog Sadie enjoying each others company. Elaine Arthur noticed the little girl sitting at the back fence, reaching through, hands open wide, to touch her dog, Sadie. She also noticed that Sadie spent a lot of time at that spot, waiting for the child. “My dog just seemed to be drawn to her,” she said of Sadie, a buff-colored Shih Tzu with a patient, gentle demeanor. It was not until later that Elaine discovered her little neighbor, four-year-old Kimberly Drudge, was blind.

Kimmie began to go blind at about three months of age, a result of ROP. She is a bright little girl who attends a preschool program and will start kindergarten in the fall. As precocious as she is, Kimmie finds it difficult to play with other children who don’t know how to interact with her. Sadie, however, seemed to know exactly what she needed. “She would literally sit there for an hour, reaching through the fence to feel the dog,” said Kimmie’s mom, Dawn Peifer. “The dog would just sit there. She wouldn’t move. I don’t know how to explain it, but the dog was willing to stay with Kimmie and be loved.”

Elaine, a veterinary assistant, began to put Sadie over the fence to play with Kimmie. Soon, Sadie visited Kimmie for sleepovers. “I wish I could have a dog like Sadie,” Kimmie would say, tenderly grasping the dog’s head and pulling her close for a kiss.

Dawn asked Elaine to be on the lookout for an adoptable dog. Elaine knew she could look for years and not find a dog as perfect a match as Sadie. One day, when the two women were chatting, as Elaine recalled,“I started getting tears in my eyes. I was looking at Sadie and Kimmie, and they just had some kind of bond. It was like they were glued together. I really felt something come over me—the

Lord works in mysterious ways—and I said,“ ‘Do you want my dog?’ Then I thought, did I say that? It’s not like I don’t love my dog.” She had adopted Sadie three years before when her older dog was dying. Now, when she looked in Sadie’s eyes, she felt her dog was telling her it was time to help Kimmie.

So, on Christmas Eve, Elaine brought Sadie, dressed in a Christmas sweater, to Kimmie’s house. When Kimmie woke up Christmas morning, her wish had come true, except she didn’t have a dog like Sadie. She had Sadie.

Kimmie, who turned five after Christmas, and Sadie, who is still four, are getting along famously. Elaine, who still has three cats to keep her company and might get another dog sometime, visits frequently. “There’s just so much love there,” she said. “It makes me feel good that I’ve done this.”

As Kimmie hugged her dog, she was asked, what’s the best thing about Sadie? Without hesitation, she replied, “Elaine.”

Children’s Low Vision Resource Center Has Moved

The Children’s Low Vision Resource Center has moved to larger premises. It is located just a short distance west of the old center, at 4064C W 13 Mile Road, Royal Oak, MI 48073 in the Oakwood Villa Apartments.

The new location provides more space for display of materials that are relevant to families of children with retinal disorders.

Paula and Rosemary are eager to meet new families and have returning families visit the CLVRC’s new home.

Advances in Stem Cell Technology

On April 26, 2007, Dr. Kimberly Drenser presented Advances in Stem Cell Technology and Gene Therapy at the annual meeting of the Michigan Chapter of the Association for the Education and Rehabilitation of the Blind and Visually Impaired held at the Marriott Hotel in Livonia, Michigan. The meeting was well attended by doctors, researchers, parents, and teachers.

While the subject matter is quite technical, the information was of great interest to both parents and teachers. Dr. Drenser did an excellent job of informing the audience of where this technology is at present and what can be anticipated in the future relative to specific eye pathologies.

Alejandro de Jesús Fernández- Khonyongwa

Alejandro was born in London England, 3½ months premature and weighing a mere 645 grams—1.4 pounds. He was unbelievably tiny—yet perfectly formed—a beautiful baby boy. Gigi and her husband, Jesus, were happy that he had arrived.

Like other premature babies, Alejandro had many problems during the first five months he spent in NICU. Many times Gigi and Jesus feared they were going to lose him but somehow he would pull through. The ROP came out of the blue. His eyes, checked weekly since he was two-weeks old progressed from stage one to stage two, but Gigi and Jesus were assured that stages one and two tend to revert themselves. At his next eye check, he had suddenly progressed to an aggressive stage three. The following day Alejandro had laser surgery on both eyes.

Because the ROP had progressed so rapidly, Gigi and Jesus were left with many questions: Would Alejandro be blind or partially sighted? Would he need more eye surgeries? They were shocked to learn that their ophthalmologists were unfamiliar with treatment for ROP as aggressive as Alejandro’s. Surely Alejandro was not the only premature baby with this degree of ROP? The internet provided some help—there were a host of eye clinics, hospitals, and organizations, including ROPARD, that dealt with ROP. Other surgical procedures, such as the vitrectomy, could be done on children like Alejandro but these procedures were not done in England. They decided to look elsewhere and sent emails to many of the ROP organizations including ROPARD.

An immediate response from Dr.Trese and Paula Korelitz answered many of their questions, but Alejandro

needed to be treated in Michigan. Although, he was still in the hospital in London, Gigi and Jesus began the process to go. They wanted to be ready, if and when Alejandro was discharged. Although most of the London doctors were supportive, some feared that vitrectomies were too controversial. Even if the surgeries were not successful, Gigi and Jesus felt that Alejandro should be given that chance.

Alejandro was discharged in January at five months old. Within two weeks the family arrived in Michigan. They learned from Dr.Trese that Alejandro’s left retina was completely detached and his right was partially detached. Two surgeries were scheduled three days apart. Unfortunately, the day after his first surgery,Alejandro became hypoxic and was readmitted with a respiratory infection. The second surgery was delayed for a month. Their stay was extended but the family received support from Dr.Trese, the staff in Dr.Trese’s office and in the hospital, and Paula at the Children’s Low Vision Resource Center.

Alejandro’s eyes responded well to his surgeries. By April, Gigi and Jesus saw a difference in his behavior. Always a happy little boy, he was more interactive with his family and his environment. Follow up visits show that both of his retinas are reattaching nicely. For the next seven to eight years, his eyes will continue to develop and they should continue to improve as he grows.

In the meantime, thanks to the many tools, resources, information, and tips Gigi and Jesus received from Paula, they do a whole range of tasks, exercises, etc. to stimulate his retinas and vision center of his brain while his eyes are healing. In addition, in London, a vision-impairment center for children supports them. Alejandro now has glasses to compensate for both his lenses being removed. He is slowly getting used to ‘Mr. Glasses’ although his favorite thing now is to take them off and chew them.

The past ten months have been long, eventful, and a bit scary. Gigi and Jesus know that Alejandro continues to be at risk for such things as glaucoma, but nothing is too overwhelming for them now. Gigi admits that sometimes she feels a bit sad because she wants Alejandro to see his parent’s faces but then she stops and remembers that he can ‘see’ in so many other ways that are immeasurable and priceless. Plus, when they see his huge grin and hear his laugh (a big belly one at that), everything is wonderful.