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

Eric Harr Power Of A Smile

Eric Harr HeaderThis is my beloved family. We’re all smiles, because we STAND with Smile Train!

What first inspired you to support Smile Train?
Our family has been aware of Smile Train’s heroic work for years. We’d see the ads in magazines, and show them to our children, Vivienne and Turner. We’d say “this is what compassion into action looks like. We are blessed, and it’s our responsibility to help others.” Then we’d write a check together and send it in.

Fast forward to the 2015 Clinton Global annual meeting, and there I am about to sit down to brunch for a plenary session. Who’s sitting to my left, but your extraordinary and wonderful CEO, Susie Schaefer. Total sweetheart. We hit it off immediately, because we were both…smiling! I’m serious! We put our compassion into action, right there, in this STAND.

What does the Power of a Smile mean to you?
Phyllis Diller said: “A smile is a curve that sets everything straight.” It really does—for the “smiler”—and the “smilee.” I don’t know of anything that easier to do and costs nothing—yet is priceless.

How has your involvement with Smile Train made you look at the Power of a Smile differently?
I look at the power of a smile differently in this way: one simple procedure can alter the trajectory of an entire life. I suppose you can measure that in better health, more education, etc. But you cannot measure the ripple effects of that new smile: the impact that person’s smile has on everyone around them, compounded over their entire lives. It’s beautiful when you think about it.

What keeps you wanting to stay involved with Smile Train?
1. The work. The direct line to impact. $250 for a new smile. It’s clear and compelling.

2. The people. The people behind Smile Train are passionate, smart, kindhearted—and fun! And that matters. It makes helping fun. That’s a good thing for everyone.

What has the Power of a Smile done for you in your life?
I’m a big smiler. I go around smiling and hugging people. It can be a little much for some folks, but I believe in the Law of Attraction (which isn’t some Pollyanna notion. It’s a scientific fact.) You get what you put out in the world. If you’re happy and smiling, your life will reflect that. Happiness is a choice—and they’re no easier way to be happy than to smile.

Sara Rezk Power Of A Smile

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Sara Rezk, from Fairfax VA is a mother of two, and her youngest, Seleem, was born with a unilateral cleft lip and palate. Here’s what the Power Of A Smile means to her. 

If you could give one piece of advice to a child with cleft what would it be?

CELEBRATE WHO YOU ARE! You are amazing children who will have to go through some additional hardships in life. The cleft you were born with does not define who you can or cannot be. Find your passion and run with it.

If you could give one piece of advice to another parent whose child was born with cleft what would it be?

With all the madness and emotions that come with a cleft diagnosis, hang in there. One day you will look back and miss your little one’s wide smile so much! This whole journey will not only empower you as parents, it will have a lasting impact on the family as a whole.

What makes you smile?

Seeing my child being so brave. Nothing gets in his way! At just 2, he is already inspiring so many people around him.

What did your child being born with a cleft teach you about life?

That we really shouldn’t just see people at face value. This is a very diverse world and we need to embrace everyone around us, whether a different culture, appearance, life style, beliefs or religion.

What does the “Power of a Smile” mean to you/ why do you think it’s so important?

Power of a Smile means hope and connection!

What has the “Power of a Smile” done for you in your life?

It has broken barriers and given me the chance to get to know so many amazing people.

Blake Haugland: Turning Lug Nuts Into Smiles

In his own words Smile Train supporter, Blake Haugland explains what motivates him to fundraise for Smile Train.

No matter how you look at it, an athlete competing in a triathlon is competing for their own personal satisfaction and that’s a great thing, but race after race I started feeling like I wanted to cross the finish line for more than myself or a new “PR”. That’s when I found Smile Train. Knowing that I could use my triathlon races and connections in NASCAR to help change a child’s life was the perfect way for my wife Melissa and myself to do this.

Through my coaching business LIMITLESS MULTISPORT TRAINING I have been able to donate a percentage of my earnings toward our Smile Train goal which is awesome because it’s a way my athletes can help raise money and train! Another amazing tool I have been able to use has been offering lug nuts from our pit stops to race fans for a donation. We have thousands of fans who tour pit road prior to the race start and they are able to come by our pit stall and hang out and grab an authentic lug nut from the prior week’s race. In the past we used to literally leave these used lug nuts on the ground or they would get thrown in the trash but now they are being turned into smiles!

I know sometimes it can be financially difficult for people to donate money but if you can incorporate it into a purchase they are already planning on making you can hit a home run every time! I want to thank Michael Waltrip Racing and NASCAR for the opportunity to make these children have a better quality of life. See you at the track!
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A Journey of Smiles Halfway Around the World

Guest blogger, William Horan, Smile Train’s Vice President, Principal and Planned Giving talks about his recent trip to Vietnam to see our local in-country medical partners and programs in action.

I recently traveled to Vietnam with my 28-year-old son Sean, who is an avid traveler and who has faced many challenges in his life. I wanted him to see what kids with clefts experience on the other side of the world.

My son and I were also joined by Smile Train’s Country Manager, Vietnam Nguyễn Trí Dũng, who we call Dzung. Dzung coordinated our partner visits and helped make us feel comfortable and welcome after our long journey. He also shared some personal insights into Vietnam’s often-difficult past, which made the trip a terrific learning experience even beyond Smile Train. Bill

We visited two very contrasting partner hospitals, the National Hospital of Odonto and Stomatology in Hanoi and the Da Nang Hospital for Women and Children in Da Nang. We toured both hospitals and met the local surgeons, nurses, speech therapists and patients. What was evident at both hospitals was a genuine and heartfelt gratitude for the Smile Train partnership. Both teams spoke glowingly of how our support has made a difference in their ability to treat children with clefts. Both hospitals embrace our partnership model.

The highlight of the trip was no doubt visiting twin brothers Don and Dai (their names translate to “Big Time” and “Rumor”) at their school and meeting their family. The boys were born with very severe clefts, but now at four-years-old you could hardly tell. They both look great, are adorable and happy, and were probably wondering what all the fuss was about!

After visiting the boys’ school, we went to visit their home. The boys live three hours from Hanoi up in very picturesque hills, amidst rice patties and water buffalo. It was incredibly serene and peaceful there. As Sean and I walked on a dike above the rice patties, we were relaxed and fulfilled, and it was at that moment that I really understood the meaning of Smile Train.

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A Miracle in Haiti: Saintelise’s Story

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Guest blogger Jennie Ellis tells the story of how Smile Train worked with CPI Haiti to save the life of a little girl living with an unrepaired cleft.

Saintelise was an invisible child in an unknown village in rural Haiti. She was reclusive, shy, and bound to her home, except for the necessary trips to the market for her mom. Saintelise spent the first 14 years of her life feeling like she was unlovable and an embarrassment. Her parents had never seen anyone with a cleft and were convinced they were being punished. Saintelise was the only one of her nine siblings who was never allowed to go to school. She did not have the opportunities of her brothers and sisters for one reason alone- her cleft lip and palate.
Our team, CPI Haiti, has spent six years in the village of Chauffard, where we have been dedicated to bettering the lives of the people who live there. It is a rural area where we started a school that has grown to 300 students in the span of four years. We have witnessed the impossible accomplished but when it came to Saintelise I had my doubts. I did not know where to begin to get her help.Saintelise 1

Her mother recounted a story to me where she had heard that doctors were coming to Port au Prince to see patients, but they could only see the first ten who came. She woke up in the early morning, walked 20 miles down the mountain with Saintelise to get to the hospital only to find out she was the eleventh patient and was therefore turned away. She was crushed and blamed herself for years that her daughter missed what she saw as her one chance of getting help.

Back in the US I started showing pictures of Saintelise to everyone I knew to try to find help. Then a friend of ours told me about Smile Train. I sent Smile Train a picture and a plea for help. From there we were given an appointment date and our team in Haiti prepared for the seven hour journey to Smile Train’s partner hospital.

Because of the surgery, Saintelise now has confidence and has become an active little girl who likes to play with the other children and now attends church regularly. After her surgery Saintelise was also eager to start school in the fall. The community sees her surgery as nothing short of a miracle. Hope has spread far and wide because of the gift Smile Train gave a once invisible child in an unknown village in Haiti.

Welcome Home Zachary: An Adoption Story

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Allison, mother of Zachary, a Smile Train cleft patient, tells us in her own words how much his surgery has impacted both of their lives.

This month, Zachary is turning FIVE! As it was certainly a miracle for him to make it to five days, much less five weeks, this is a momentous occasion.

Zachary is from the foothills of the Amhara highlands and was born in Addis Ababa, Ethiopia. As with so many children born with clefts around the world, his family’s reaction was to consider him as part of a curse, particularly as his was a severe, bilateral cleft lip and palate. Between such cultural views, a lack of medical care, and wide-scale poverty in Ethiopia, it is estimated that over 90% of babies with cleft lip and palate in that country do not survive.

Luckily, after a rough first week of life, some neighbors told Zachary’s birth mother about a non-profit hospital across the city that could help kids like him. Soon after, he was enrolled with Smile Train. The hospital cleft program set him up with squeeze-bottles for feeding, and with a formula program, so he could catch up on some much-needed nutrition. These measures saved his life.

While every effort is made to keep cleft children with their families, in Zachary’s case that was not an option. I had been living in Addis Ababa for several years, and was teaching at the American school there, when I first heard about Zachary. His doctors knew that I had completed a local adoption the previous year, and I was asked to share some information on the process.  Long story short, after all other doors closed, I happily agreed to adopt him. I brought him home just after his first lip repair surgery, and stayed with him in the Ethiopian hospital for his next two surgeries, as well.Tekola 13_5_10 #2

Now, Zachary is a happy, healthy, creative, energetic, and curious five-year-old. He and his older brother are the best of friends, and together we have all had some great adventures. He loves to hike, swim, sing, and entertain those around him…..he definitely makes full use of his great smile!

We have spent the past two years on the Caribbean island of Sint Maarten, where I am attending medical school. I am looking forward to being able to help kids like Zachary in the future.

As we celebrate Zachary this month, truly a “one in a million” kind of kid, we are grateful for Smile Train and all of those who have made his health and surgeries possible. As we say in Ethiopia, “Betam Amesegenalehu!”

From the hospital where Zachary received his Smile Train surgery;

“CURE International’s partnership with Smile Train has allowed CURE hospitals to have an even greater impact on children in the countries we serve. In Ethiopia alone, we have performed over 1,100 cleft surgeries, restoring the smiles of children and families that were once considered outcasts in their own families and communities. Stories of restoration and healing, like Zachary’s, drive home the need to make our organizations’ mutual focus on surgery a global health priority.”

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