Crouzon's Syndrome Crouzon's Syndrome| Crouzon-Syndrom Σύνδρομο Crouzon Síndrome de Crouzon Syndrome de Crouzon Sindrome di Crouzon クルゾン症候群 Síndrome de Crouzon Синдром Крузона Crouzon Sendromu Синдром Крузона 克鲁宗综合症

Voice 1

Hello. I’m Marina Santee.

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And I’m Ruby Jones. Welcome to Spotlight. This programme uses a special English method of broadcasting. It is easier for people to understand, no matter where in the world they live.

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Children gathered in a small village school. |gathered||||| Kinder versammeln sich in einer kleinen Dorfschule. It lay in Bukomansimbi, Masaka, southern Uganda. The children laughed and pointed their fingers to the back of the room. Here sat a small boy. His name is Petero Byakatonda. He was thirteen years old. He looked down. His eyes filled with tears. But he was strong. He would not show his tears to them. He opened a book. He tried to see the words through his teary eyes.

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Petero has a rare condition. It is called Crouzon’s syndrome. He was born with it. Crouzon’s syndrome affects the way a baby’s head develops. The parts that join the head bones are called sutures. |||||||||joints of skull Normally, as the brain grows, sutures expand. Imagine touching a baby’s head. You can feel soft parts. These are the spaces between the head bones. They give the baby’s brain plenty of room to grow. The soft parts usually disappear within twelve to eighteen months. This is when the brain stops growing. And so the sutures fuse - that is they join together permanently. |||sutures|||||||permanently

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In Crouzon’s syndrome the sutures fuse together too early. |||||join together||| The brain still grows. And so it forces the head to expand in a strange, unnatural way. How this happens depends on which sutures have fused. ||||||||fused Usually it is the sutures that go from the front to the back along the top of the head bone. This means that the head cannot grow in width. So instead the head grows in length. It becomes long, high and thin.

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Crouzon’s syndrome was the cause of Petero’s appearance. Crouzon||||||| His head was long and high. His eyes looked like they were coming out of his head. They also appeared closer to the edges of his head. Crouzon’s syndrome was the reason the children laughed and insulted him. A child’s pain is worse than your own, mothers say. Petero’s mother knows this too well. She explained how children threw stones at her son. She told how they treated him like an animal. It was for these reasons that Petero’s teacher suggested he leave the school. And he did. But the future did not look bright for the young boy. A world without education would make things even harder. Then, in 2007, everything changed.

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A Ugandan social worker visited Petero’s village. She took a picture of the young boy. And she showed it to her doctor friend. The doctor then showed the picture to specialist doctor Kenneth Salyer. Doctor Salyer is head of an aid group. It is called, ‘World Craniofacial Foundation.' This group works to help children with problems like Petero’s. The group provides money to pay for the necessary operations. Doctor Salyer looked at Petero’s picture. He wanted to help.

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Only months later Petero was standing on American ground. Sadece aylar sonra Petero Amerikan topraklarında duruyordu. He stood with his guardian; Immaculate Nanyonga. |||||Immaculate| Nanyonga is a social worker. She looked after Petero until he returned home to Uganda. Petero was amazed at the lights and traffic all around him. It was very different to his village back home. ‘There is no darkness anywhere' he said. Petero’s mind was full of his new surroundings. This was good. It stopped him thinking so much about the difficult operations ahead of him.

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Petero held his new play telephone. And he entered the hospital operating room. Salyer and his team had a long and difficult operation to perform. First, they put Petero to sleep. Then they made a small cut in his head. They pulled the skin down over his face. They needed to expand his headbone, his skull. So they made a series of holes in his skull. This created enough space for the brain. The doctors removed a large piece of his skull. This eased the dangerous pressure that was on his brain. In time, Petero’s skull would create its own bone. But first, doctors had to begin thinking about changing the structure of his head and face.

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The second operation involved restructuring Petero’s face bones to make room for his eyes. Doctors carefully cut the face bone structure away from his skull. They could then move it to the right place. They used a metal structure to hold his face in its new position. They called this metal structure a ‘halo.' Doctors fixed the metal halo into the bones of Petero’s skull through his skin. It was a long and difficult operation. Petero lost eighty percent of his original blood volume. The operation put his life at risk. But the young boy was strong. He was a fighter. And so he survived.

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Nanyonga walked into Petero’s hospital room. Her eyes filled with tears. She saw the small child surrounded by the huge metal halo. Doctors said he must wear it until his bones healed. This could take up to two months. During this time, he was not able to eat solid food.

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Nine weeks later, Petero returned to hospital. Doctors removed the metal halo. They also operated again. This time, they made his eyes straight. And they restructured the bottom part of his head. It still did not look exactly right. But the doctors had to leave room for natural growth. In a few years, Petero would look even better. But Petero was not thinking about that. His biggest concern was what he would eat for his first proper meal!

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At last, Petero’s operations were finished! He would not need any more until he reached the age of eighteen [18]. He was ready to return home to Uganda. He said,

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‘I have changed a lot. I think many people at home will not recognise me. I want to go back home and return to school. I want to become a doctor to treat children.' Voice 2

It is months since Petero’s operation. He stands on the school grounds in his home village, in Uganda. He is surrounded by children. But this time they are not laughing at him. They are listening with great interest. Petero tells them stories of the new country he has seen. His big brown eyes light up as he speaks. Is this the same boy that left with tears and pain? The truth is, not many people can answer that question. Apart from his family, not many people knew Petero before his operation. Fear stopped them from making him their friend. Fear made them insult him instead. They were afraid because he looked different. Now, people in his village know that Petero is a loving, caring child. It is just a shame that he had to go through so much before they could find this out. Petero’s mother looks over at her son and smiles happily. At last, other people can know the son she always loved.

Voice 1

The writer of today’s programme was Marina Santee. The voices you heard were from the United Kingdom and the United States. Computer users can find our programmes on our website at www.radio.english.net. This programme is called, ‘Crouzon’s Syndrome.' Voice 2

If you have comments or questions about our programmes, write to us. Our address is radio @ english . net. Thank you for joining us today. Goodbye.