22 Years of Fear

October-19-Blog


When Allo Charles was born with cleft lip, his parents recognized what the condition was, but had never personally seen it before. The children in their village who were previously born with cleft lip or palate were either in hiding or had been killed. Clefts in this village, in rural Chad, are seen by the villagers as a bad omen and are considered a punishment from God for the family’s sins. After Allo was born with a cleft lip, his parents quickly decided that every child is a gift and they would openly raise Allo in their community, without shame.

Almost immediately, there were harsh consequences. Allo’s family wasn’t allowed to attend village meetings, and they were socially ostracized. Allo remembered, “I couldn’t eat or play with others because their parents wouldn’t let their children get close to me. There were several superstitions about my cleft, and they even made me believe some of them. I thought I was cursed.”

When Allo attended primary school, he said that his fellow students and teachers made his life miserable. They said his education was a waste of time and he would never amount to anything. “School for me was hell, but living with an unrepaired cleft made me strong. The more I was insulted, the more I wanted to prove them wrong and make something of my life,” said Allo.

Allo thought that secondary school might be his chance for a better life. The day he left his village for a room in the much larger city of N’Djamena, his new landlord wouldn’t allow Allo to move in. The landlord said that his children were afraid of Allo and he did not want them to catch his disease. Allo decided to move in with his cousin while he figured out what to do next.

Fortunately, during this downtime from school, he saw a Facebook post from Smile Train partner WECCARE  Foundation. He thought the offer of free cleft surgery was too good to be true, but decided to go to WECCARE  after seeing the program was endorsed by the First Lady of Chad. “On that day, for the first time in my life, I discovered that I wasn’t alone. There were dozens of people who looked just like me at the hospital.” Three days later, Allo received his Smile Train sponsored, free cleft surgery.

Allo Now Allo says he wants to repay Smile Train and WECCARE’s  wonderful gift of a new smile by going back to school and becoming an advocate for children with cleft lip and palate living in Chad.

Flowering Hope for Lavender

September-30-Blog-Header-Image

When Lena gave birth to her daughter Lavender, the whispers about the infant’s cleft lip spread quickly throughout their tiny village of Masindet, Kenya.  As neighbors lined up to see the baby, Lena was devastated when she overheard someone saying, “Babies like this shouldn’t exist.”

The family struggled to raise the funds for cleft surgery for more than a year. Lena’s stress and disappointment boiled over during a family argument – she decided to leave the family and run away. Now alone with Lavender, her father knew that he needed help so he asked his mother Irene for support.

Irene fortunately knew that surgery could correct Lavender’s unrepaired cleft lip because her cousin also had a cleft. She told her son that Lavender’s condition was nothing to be embarrassed of. “Stop questioning why Lavender was born with a cleft lip, it is just something that happens, and it can be repaired,” she said.

After asking around, Irene found Smile Train partner, IcFEM Dreamland Mission Hospital and made an appointment for Lavender. On surgery day, the route to the hospital was only accessible by walking so she carried Lavender more than 16 miles through muddy and hilly terrain.

After the surgery, Irene was very happy with the results. “The surgery has made the future of my granddaughter bright,” she says. Irene left the hospital, promising to testify about the miracles being performed at IcFEM Dreamland Mission Hospital. Irene said her next task was to track down Lena in hopes of Lavender’s parents reconciling and raising their child together.

Lavander post op female Kimilili Kenya copy

Anmol: The Girl Stuck in Darkness

Anmol-Sharma,-age-7,-Amandeep-Hospital,-India,-at-her-home

Anmol was born to a poor family in a dusty, border village near Amritsar, India. The birth of a girl is a subdued event in most Indian households, but when Anmol was born, it became a moment of shock and disbelief. Anmol’s family had never seen a child with a cleft before. Anmol’s cleft lip and palate seemed like a curse and the family worried about the future of their daughter.

The family feared that they would face ridicule and be ostracized by their neighbors. So they decided to swaddle Anmol in layers and kept her hidden from all eyes. Anmol was never taken out of the house and if any visitors came, they would find her wrapped up fully in a blanket. She was the daughter who lived in darkness.

Then a doctor at the local hospital told the family that Anmol’s clefts were correctible and she could have free surgery at local Smile Train partner, Amandeep Hospital. Surgery for both her cleft lip and cleft palate were complete successes and the family learned to accept and love their only daughter.

Seven years later, Anmol’s cleft lip and palate surgeries have transformed her life. Anmol is now a beautiful seven-year-old with a charming smile. She is a straight-A student, who loves to sing and dance. The infant who was stuck in darkness now radiates light and brightens the day of everyone she meets.

Anmol-Sharma,-age-7,-Amandeep-Hospital,-India,-loves-to-play-with-her-baby-sister

1st Meeting of Smile Train’s Chicago Advisory Council

Chicago Advisory Council

Back Row left to right: Dr. Alvaro Figueroa, Lou and Kate Hall, Jessica Duggan, Suzanne Le Mignot, Howard Witt. Front row left to right: Susan Reyman, Michele Figueroa, Marilyn Witt, Yani and Peter Huften, Linda Gerber. Not pictured: Sondra Rabin, Jason Lersch and Neville Shah.

The first meeting of Smile Train’s Chicago Advisory Council was a resounding success. This newly established group of Chicago-based loyal Smile Train supporters is committed to raising awareness about clefts by lending their skills, insights and knowledge. The fifteen elected members of the council come from diverse professional backgrounds and will host several Smile Train events throughout the year.

The meeting, graciously hosted by Howard and Marilyn Witt, included presentations about Smile Train’s sustainable model as well as information about cleft lip and palate. A highlight of the evening was when the group took a break from their meeting to enjoy the fireworks show visible from Navy Pier.

Smile Train is so thankful for the commitment shown by members of our Chicago Advisory Council. Ellyn Harris, Smile Train Director, Major Gifts said, “We are excited to see the effect the council will have on the Chicago Metro Area and ultimately all of the new smiles the group will help provide for children with unrepaired clefts.”

Sukma: Words Hurt

Sukma Quote


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.

School For Tuhaise

Tuhaise 1Tuhaise was born in a remote village in Kibale, Uganda. As soon as his mother and father saw his cleft lip, they left the village and abandoned him. When his Aunt Maimuna heard this horrible news, she went to see her nephew. “I immediately connected to Tuhaise and decided to take him in; I had little money and many children to take care of, but Tuhaise needed a mother,” she recalled.

Tuhaise 2

Maimuna is a subsistence farmer on a small piece of land. She knew that cleft surgery was available at the regional hospital, but thought she would never be able to afford it. Years went by and the young boy remained at home while his cousins attended school. Maimuna said, “It was heartbreaking to see little Tuhaise suffering from rejection in the village, my children would ask me to take him to the tailor shop to have his lip ‘sewed’ so that he could look normal.”

Fortunately, Smile Train partner CoRSU hospital was running a community mobilization campaign near their village to sensitize people about accepting disabilities. Maimuna met with the hospital staff; she knew it could be her only chance to have Tuhaise medically attended to. With a few clothes in her bag, she left home and headed to CoRSU.

tuhaise 4With funding from Smile Train, Tuhaise received his new smile and Maimuna could not stop singing words of praise to the people who made her nephew’s new smile possible. She recently reported that, “Tuhaise is no longer an object of ridicule in the village, he will go to school with my other children very soon.”

 

Disappeared From the Face of the Earth

Goizom's story

Goizom Danza Maleguidjeo’s name translates to “disappeared from the face of the Earth” in her native language in Cameroon. Unfortunately for Goizom, this is not far off from how she spent her childhood. She could not attend school or play with other children her age because of the fear from local parents in her village that she would bewitch their children.

It is a tradition in Goizom’s Mafa tribe for families to send their first daughter into marriage when they turn 16, but this was not the case for Goizom. At age 18, she still lived at home with no suitor, or any friends to talk to. The men in her village believed that since Goizom was born with a cleft, all of her future children would have clefts as well.

Goizom’s life changed one day when a Smile Train community worker came to her village. When the community worker announced that Smile Train helps provide free surgery for children with clefts, Goizom couldn’t believe the news. She knew her parents could not afford the financial cost of a surgery to fix her cleft and she had given up on her dream of having her cleft repaired a long time ago.

When Goizom arrived at Smile Train’s local partner, Maroua Regional hospital, she was surprised to see so many people who had similar cleft conditions as her own. She watched as patients would go in and out of surgery and was amazed by the great new smiles on their faces. When her turn finally arrived, she was ready. 18 long years of waiting for a new smile were finally over.

Today Goizom has returned to her village a completely changed person, proud of herself and full of self-confidence. No longer “disappeared from the face of the Earth,” she is looking forward to her bright future that is now full of endless possibilities.

Goizom After