Follow Ker Alue on his journey in the US

• Ker Aleu Deng one of the Teenage captives to be freed by CSI
• Ker arrives in the US
• Surgery Day
• Post Surgery
• Labor Day
• Ker at Lighthouse Music School in New York
• Ker Saw a Rainbow for the First Time
• Ker Testifying in Front of Congress
• Ker at Lighthouse

Ker Aleu Deng one of the Teenage Captives to be Freed by CSI

"I don’t know where I was born. All I can remember is living in the North with my mother (Angel Mangok Diing) and Zakaria Salih. Zakaria was our master. My mother lived with him as a concubine. My mother told me that my father died and that we were captured and taken to the North by Murahaleen (Baggara Arab) raiders. We lived with Zakaria in a village called Jama Jur. (It’s in Kordofan, between Meiram and Muglad.) My main work was to look after goats and pick hibiscus leaves for tea. Zakaria was a violent man. He often fought with my mother. Sometimes it was so bad she would run away to neighbors for protection. Sometimes Zacharia would chase us away. He beat both of us a lot. He usually used a camel whip. I had to call Zacharia “father”. But he called us bad names, like “kafir” (unclean infidel), “abd” (slave) and “jengei” (nigger). He never called me “son”. He gave me an Arab name “Abakir), and never called my by my real Dinka name. My mother gave birth to Zacharia’s children. My half brothers and sisters were unkind to me. I don’t know what happened to them. They disappeared and no one told me where they went. Zacharia sent me to khalwa (Islamic school) to learn how to be a good Muslim. I was taught there that a kafir is a dirty person who does not know God and eats filthy things. Zacharia blinded me by hanging me upside down from a tree and rubbing chili pepper in my eyes. He left me hanging there for a long time. To add to my misery he lit a fire near me so the smoke would drift into my face. I screamed throughout the ordeal. I thought I would die. Zacharia did this because he said I didn’t do my work properly. He accused me of allowing hibiscus leave to get wet, allowing his animal to get lost and skipping Islamic instruction at khalwa. He also claimed that my mother and I were planning to escape. I was saved by a neighbor named Bakhit. He was an imam. Bakhit took me into his home and gave me work to do. At first I could still see. But my sight gradually deteriorated. Now I can see nothing, expect some strong light in one eye. (Ker reacted strongly when a close-up flash photo was taken at night.)  Bakhit did not abuse me like Zacharia. He was a kind man. But once I became completely blind, he said I was of no use to him. So he gave me to Osman Bashir, who brought me to the South. Since coming back (in May 2010), I have been staying with people from a church in Ariath. I like being at the church services. The church also provides some education. I like sitting in on the classes and listening to what is being said."

Compiled by JE, based on GW’s interview on 19 May, translated by Dr. Luka and JE’s interview on September 11, translated by Akuei Akuein.

Ker arrives in the US (8/16)

Ker arrived in New York on the 16th of August. He was accompanied by CSI's field physician Dr. Luka Deng. They went on the same day to the Manhattan headquarters of Lighthouse International for an initial eye examination. On the following day, they went to Wills Eye Hospital in Philadelphia for a more sophisticated examination. The doctors at Wills found that one eye is so badly damaged that there can be no repair. There is some hope that Ker will have some sight in the other eye following surgery, but it is by no means certain. Surgery is scheduled at Wills for tomorrow morning.

Surgery Day (8/24)

This morning Ker went into surgery at the Wills Eye Institute at 7:30am - thanks to the generous support of Bruce Ratner and Pamela Lipkin, MD.The first step is to have the Glaucoma surgeon make sure the eye pressure is controlled. A plastic cornea is inserted so Dr. Haller can look and see if there needs to be any retina repair. Dr. Hammersmith will then put in a donor cornea. The cornea is available on account of the tragic death of a young person and the sponsorship of the Lions Club.

Dr. Hammersmith says it is a beautiful cornea. Ker could not ask for a better eye team in the whole world. He will not get a lens today as you do not need a lens to see. Having a lens put on would be too much surgery for today. Dr. Haller said to have low expectations on how much eyesight Ker would regain. But it is now all in the hands of God and the surgeons. We hope and pray for the best.

Post Surgery (8/25)

Great news from Drs. Haller and Hammersmith:

Follow up exam this am shows no infection, no complications, no swelling in the wall of the eye, no bleeding in eye from overnight. He does have raised Interocular Pressure.

He's also coming out of anesthesia nicely.

When Dr. Hammersmith waved her hand in front of his naked eye this am he could notice something moving …

Dr. Haller says : "He looks fabulous."

"It's great – we're taking one step at a time…." She said.

He still has to keep his head down because there's a gas bubble that was put in the eye yesterday during the surgery that pushes the retina to the back of the eye so, as it rises, he needs to keep his head low.

Dr. Haller believes part of the worst is over –he still has a little ways to go but so far so good!

Doctors want his eye to continue "marinating" in anti inflammatories…

His cornea is also getting "plenty of nourishment…"

He's scheduled to return for another follow up tomorrow at noon here at Wills with Dr. Haller.

Medication-wise, he's on a drop and a pill for pressure in the eye, he's starting Acutane to reduce the chances of the retina detaching, he's on antibiotics, cream for the cornea, and steroids.

No restrictions on what he can eat. He can bathe or shower –just protect the eye with a cover so he doesn't bump into anything or get an injury during this crucial recovery time. Still needs to keep his head down. At least for a few more days.

Second Checkup (8/27)

Ker's doing great!

Dr. Haller still advises taking it day by day.

The gas bubble is still filling the back of the eye which is good.

The key is his pressure is still a bit too high (glaucoma) and he's on medication (2 new drops) to manage that.

The pressure was high before the surgery – so it's been a problem – but if "normal" is 16, 17, 18 or up to 22-- his is too high at 39.

Labor Day Weekend (9/5)

Ker is in upstate NY for Labor Day weekend. He sees light and dark, and some movement of people. That is a miracle as shapes usually do not happen till about three weeks after the transplant. He is now 12 days out. Ker is having a hard time keeping his head down but we are encouraging him to do so at every opportunity. His mood is great and he laughs a lot. Today he played a snare drum, but he said his eye was so sensitive that he felt it in his eye. Dr. Haller and her colleagues at Wills Eye Institute are miracle workers! This week he will hopefully start cane training (for blind and low vision people) and music and English at Lighthouse International.

Ker at Lighthouse Music School in New York

Ker Saw a Rainbow for the First Time

Yesterday Ker saw parts of rainbow. Not the big beautiful rainbow that we see, but parts of it. He could distinguish colors and see that it had a bend in it. This is wonderful! However, Ker will always be somewhat low vision. Dr. Hammersmith, the cornea specialist, says the best Ker may be able to see will be the big E which is 20/400. That will enable Ker to get some additional vision aids such as glasses that magnify and large print computers. He will be able to get around but may still use a white cane. However, miracles happen, as we know.

The rainbow happened after a full day of some medical tests. In the morning he had an MRI for chronic back pain- much of it we think from the beatings and work as a child collecting tea. He has been having some fevers so he has had blood tests that Dr. Gaynor thinks may be malaria so he was tested for that. He was feeling he was losing the tiny bit of vision he had so our caregiver/translator Agot smartly called Dr. Haller at Wills Eye Institute and took him there. He was very nervous and upset.

Three ophthalmologists saw him yesterday, and they said all looks good. Dr. Julia Haller says that the in and out of his vision is most likely due to some fluid build up from the healing and the gas bubble still being present. The pain in his eye from the sutures pulling and also some pressure as the glaucoma tube is still not open (they put it in and closed it so the gas to hold the retina in place would not leave- it will open as the sutures dissolve.) Dr Haller thinks that the searching movement present in many blind people's eyes has reduced and therefore he is seeing more.

So, that is the medical update. He is also at Lighthouse International, which has the only school for Blind music in the country. He is taking piano and his teacher was amazed that he had never been at a piano before.

Lighthouse update

"Last week Ker was evaluated by the Lighthouse team of experts who assessed his mobility, his ability to read and write and learned of his interest in music. Our experts decided that Ker should start with two of the most essential skills – learning to navigate with a cane so he can walk independently and learning to read English and Braille and begin to write. These skills are the building blocks of greater independence and self-reliance. Ker is just beginning his education.

The team also discovered that Ker loves music, and arranged for him to take music lessons at the Lighthouse Filomen M. D'Agostino Greenberg Music School. This integrated approach to Ker's care will boost his self-confidence and help him in the most comprehensive way.

Recently Ker met Joan Matlin, one of the thousands of wonderful, dedicated volunteers at Lighthouse International. Joan is a retired New York City public school teacher with 27 years of experience, including teaching English as a second language.

She showed Ker a book called "THE ALPHABET BOOK". Produced by the Museum of Modern Art, it uses tactile lettering, graphics and Braille to describe the alphabet and pictures language. He could feel and touch the forms of the letters and the pictures. Ker immediately showed her his zest for learning. After studying a few of the letters he asked for a pencil and paper; he wanted to see if he could draw the letters and he did! In this same moment, Ker was also discovering - for the first time -- how to use his hands to hold a writing instrument.

Ker also expressed an interest in learning Braille. Joan and Fran Libowitz, Lighthouse Braille Administrator, will work together to prepare Ker's lessons so that the English and Braille instruction complement one another. Then he can have a basic knowledge and understanding of both languages.

New worlds are opening up to him."

Ker at Lighthouse

Ker is making great progress. He saw Dr. Haller at Wills Eye Institute this week and she thinks that soon they will be removing a bit of the stitches in the cornea. This will allow him to see more. We are hopeful that he will be able to get his first pair of glasses soon. That will allow him to see more as with a lens he could see 20/800 and better at Wills this week.

Ker is demonstrating a quick grasp of the English language and alphabet. Using tactile letters, he was easily able to identify and speak the name of each letter.

This week he also started typing braille letters on a Braille machine (and has one at home now to practice). He learned the letters that make up his name and was trying to read the letters as he produced them! When he typed his name he said "It feels good."

His English is also improving rapidly. As part of his language instruction he went to Central Park where he could touch and feel and discover the trees and leaves and get a feeling for the park. He even got permission to pet the carriage horses.

And, he is really enjoying his music lessons. This week he learned to play one of his favorite songs "Jesus Loves Me" on the piano.