Patricia Simon: Cleft Patient to Smile Maker

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Former cleft patient and long-time Smile Train supporter Patricia Simon explains why she’s dedicated her life to being an advocate for those affected by cleft lip and palate.

My name is Patricia Simon and I was born with a cleft lip and palate. I had very supportive parents who were able to provide me with cleft surgeries and speech therapy and I could always count on the love and support of my four siblings and friends. I was fortunate, but my family and I also had to traverse a great deal of challenges in my road to cleft repair, which has led me to become an advocate for others affected by cleft lip and palate.

As a registered nurse, I get to work hands-on with people facing health issues in my community. Over the years, I’ve been able to care for babies born with cleft lips and palates and provide support to their families. I’ve found that it’s very comforting for parents to get advice from a medical professional who faced the same situation. My goal is to lead my patients to appropriate care so they can come out of it with a positive and optimistic outlook.

I know how frustrating ongoing medical care can be. Over the last two years, I underwent multiple surgeries to build bone for my palate in order to accommodate dental implants for my two front teeth.

Going through medical care as an adult was one of the many reasons I decided to start my own website called Smile with Simon and my blog Simon Says Smile Today. These sites offers support, information, and an opportunity to network with others affected by cleft lip and palate and other craniofacial conditions. I hope that others will benefit from my knowledge and children can find a space to navigate through difficult social situations, such as bullying.

Birds 300I’m also trying my hand at writing a children’s book about cleft lip and palate. The story is about Simon, a cardinal born with a separation in his beak. It will be a story of love, acceptance, and kindness. It will speak to the importance that a smile has on others. Smiling is so important for the soul!

What counts in life is not the mere fact that we have lived. It is what difference we have made in the lives of others that will determine the significance of the life we lead -Nelson Mandela

Sukma: Words Hurt

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Amir was worried about the arrival of his fifth child. He would need to find a way to support the family on an income of $36 a month as a struggling rice farmer living in West Java, Indonesia. When his son Sukma arrived with a cleft lip, Amir did not know what to do.

His small rice paddy crop, meant to be sold for income, was quickly exhausted to feed his family so Amir had to sign up for the only job he could find; carrying quarry rock down a mountain.  Amir’s few moments of free time were spent looking for help for Sukma. Amir searched for free cleft surgery for his son and he was devastated when two cleft mission groups denied him without explanation.

When Sukma started school, his father said he would cry every day when he came home. He hated the teasing from his schoolmates and teachers in his school, but he said it was most hurtful when complete strangers would taunt him. Because of his frustration and the family’s financial situation, Sukma dropped out of primary school.
Sukma went to work to help out the family and he said for 17 years he lived in shame because of his unrepaired cleft lip. After 17 long years of waiting, Sukma heard about local Smile Train partner Obor Berkat hospital and the year-round free cleft surgeries they provide.

Sukma AfterOn his surgery day Sukma said that he was afraid, but excited. “My unrepaired cleft lip forced me to drop out of school and live my entire life in shame, when only 30 kilometers away free Smile Train surgery was waiting. It would have changed everything,” he said.

After his surgery Sukma reports that his father could not believe the change in him, “He keeps calling me handsome.” Looking toward the future, Sukma is happy to begin his new life that was 17 long years in the making.

Gulaab Presents… A Monkey Show!

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Gulaab, spent 46 years of his life with an unrepaired cleft lip living in Pakistan. Because of his cleft, it was hard for him to find a job, so he made a living moving around from village to village putting on monkey shows. Gulaab formed strong bonds with his monkeys. He connected with them because they accepted him no matter what he looked like. Unfortunately, because of his unrepaired cleft, he was unable to form the same kind of bonds with other people.

One day Gulaab was putting on his show at a gas station, and he was approached by Dr. Ijaz Bashir, who by chance was the founder of the Cleft Centre Gujrat. Dr. Bashir told Gulaab that there was a way he could receive free cleft surgery. Gulaab was amazed and said it was the best news he’s ever heard.Gulaab 2

When Gulaab arrived at the hospital, he worried that he couldn’t afford to take a break to heal from the surgery, his shows were his only livelihood. The Cleft Center Gujrat came up with a perfect solution. They offered to help compensate Gulaab by amusing the babies in the hospital who were waiting for their cleft surgeries with his monkey shows and Gulaab accepted the offer happily.

After his surgery Gulaab left with a big smile on his face. He was overjoyed to get back home to see his monkeys.


From Cleft Patient to Cleft Surgeon: Zhou Xiaomin’s Story

After Surgery(STX ID:GD-4-08-01093)“I was shy, and helpless, the world became pale in front of me. For a very long time I didn’t dare to smile, I was at war with my heart. I spent most of my life overcoming an inferiority about my deformity and my life was filled with inner anguish.”

This is how Zhou Xiaomin felt his whole life, before he received surgery to fix his cleft lip four years ago. Zhou says he grew up in an ordinary rural home in China and he tried to hide his inner anguish from his family. Zhou says, “I needed to teach myself that I had to let go, I belonged to the world too. Life is hard for a lot of people and it was time to pursue my freedom.”

After high school, Zhou decided to pursue a profession in the field of stomatology, the study of the mouth. He was admitted to Gunagzhou Medical College as a postgraduate in 2009. He was instructed by Dr. Zheng Cangshang, director of Stomatology Department of Shenzhen 2nd People’s Hospital, which is a Smile Train partner hospital.

SONY DSCZhou says, “Dr. Cangshang’s positive attitude toward life and helpful spirit deeply affected me, and it filled me with hope for the future.” After years of waiting, Zhou requested that Dr. Cangshang perform his cleft surgery, financed by Smile Train. After the surgery took place in 2010 Zhou said, “My life changed completely since then. I began to learn to smile”.

Now Zhou, better known as Dr. Zhou, is finally the confident young man that he always knew he could be. His dream of becoming a cleft treatment surgeon is coming true, and he has a lot more to smile about. Zhou says he wants to devote his professional knowledge and skills to help more Smile Train patients.

He would like to share his story to encourage more Smile Train patients to change their lives as well. “As a doctor, I will devote all my lifetime to help the children with cleft lip and palate, but we have a lot of work to do. Thanks to Smile Train, you gave me hope and the courage to change myself,” says Zhou.

 

Besha Medical Centre’s Cleft Week June 24-29, 2013

Smile Train staffer Jane Ngige (right) and Smile Train Patient Paskali Mading’a pose for a photo shortly after Paskali's free cleft surgery at Besha Medical Centre in Tanga, Tanzania.

Smile Train staffer Jane Ngige (right) and Smile Train Patient Paskali Mading’a pose for a photo shortly after Paskali’s free cleft surgery at Besha Medical Centre in Tanga, Tanzania.

Tanga, Tanzania—Smile Train Africa’s Program Assistant Jane Ngige reports from the the field.

Besha Medical Centre’s Cleft Week was recently held from June 24th-29th. At the time of my visit on June 25th, six cleft patients had already been admitted at the hospital. Prior to the cleft week, awareness creation was done through radio, newspapers, and distribution of posters by way of bus transportation, hospital staff and volunteer mobilizers. A Smile Train-branded van also came in very handy in venturing into the village to create awareness about the ongoing free cleft surgery Smile Train program. Districts in Tanzania the staff visited in the region included Muheza, Lushoto, and Pangani. The staff at Besha Medical Centre are already making plans to visit Kilindi and Handeni districts which are a bit farther away.

Paskali before surgery.

Paskali before surgery.

Paskali Mading’a’s Story
I will call Paskali the old guy who is more of a risk taker than the younger generation from his village. I use ‘risk-taker’ very loosely – it’s more of faith and hope for a better future. Paskali is a 51-year-old gentleman that has lived with a cleft lip all his life. This was not because he did not want or seek treatment earlier. The cleft bothered him but he never had enough money to have it corrected – and later in life, he went to different clinics and was told it was too late to get treatment. In other words what they said was: “This is your life, accept it.” Good thing this did not deter him, because now he has the most beautiful smile. When word came to his village about the free cleft surgery at Besha Health Centre, six patients were identified but were skeptical about the treatment, fearing the operating table. All except him. He traveled over ten hours with a friend who, two days later, requested the surgeon to take a photo of Paskali after the surgery. He printed it, left Paskali in hospital, and traveled all the way back home to show everyone Paskali’s transformation. Needless to say, the rest of the patients hurriedly made way to the hospital for their own transformation!