A Fresh Start for Little Jiaxin

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Sichuan Province, China – The arrival of a new baby typically brings a lot of happiness to a family, but when little Jiaxin was born with a cleft lip and palate the Yangs knew they wouldn’t be able to afford surgery for their child. To get Jiaxin the help she needed the family moved to Chengdu in hopes that the city would have better medical facilities.

Pre-Operation(IDú║sc-13-77954)To survive in their new city, Jiaxin’s father worked doing manual labor at a construction site, and her grandmother and grandfather worked long hours every day to make extra money for the family. All of the hard work was worth it when the Yangs found out that Smile Train’s local partner hospital, West China College of Stomatology Sichuan University, would be able to give Jiaxin the help she needed.3

Jiaxin, with the help of Smile Train, began her journey to a new smile with free cleft lip surgery. Since her surgery, Jiaxin’s family said they now have a new sense of hope and a more positive attitude in their own lives.

Today, 2-year-old Jiaxin is a lovely and lively girl who loves to laugh and talk.

In March 2015, Jiaxin met Smile Train’s CEO, Susannah Schaefer, along with Shi Bing, Vice President of West China Stomatology Hospital of Sichuan University, and Dr. Shell Xue, Senior Vice President and Regional Director of Smile Train North Asia. Susannah was in China supporting the local nurses at a special training conference. Susannah’s advice to little Jiaxin was to continue to have the confidence to overcome difficulties and to embrace her new life.

Jiaxin’s mother is very grateful to Smile Train for giving Jiaxin the ability to be like the other children, and a second chance at life. She said that Smile Train not only gave them financial help, but also brought hope to them and an opportunity for a brighter future. 2

 

How a Smile Created A Personal Mission

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New York, NYSmile Train supporter Lisa Fast shares her experiences with cleft and Smile Train.

After having such a positive experience dealing with my cleft lip and cleft palate, it has become my passion to help others achieve the same happiness in life. A life without a repaired cleft would be unbearable. Personally, I would not have made it through my years of soccer and would not currently be at the University of California, Santa Barbara. Sophomore year of high school I truly realized how lucky I was to have grown up with the treatment, doctors, and support that I did.

I initially became involved with Smile Train when I made a personal fundraising page. I set my goal as $5,000. I wrote emails and letters to family, friends, and neighbors creating awareness of the fund. Also, after my soccer games I would recycle water bottles from teammates. Because recycling is only a few cents a bottle, whatever I made recycling my mother would match. In place of birthday gifts, I asked for donations to be made. Between these sources I reached my goal of $5,000 in as quickly as one month. I then decided to bump up my goal to $10,000 because why not continue to help other children have a chance to receive a new smile?

Lisa and Mom2 A deeper involvement with Smile Train began after the tragic passing of my mother my junior year of high school. Because of her equal passion for helping others with clefts, our family created a Smile Train Memorial Fund in her honor. As of today, the total value of gifts on her page is $138,634.28 from 624 donors. Between myself, and now with the loss of my mother, over 590 children will be able to receive surgery. These numbers reflect the impact my mother had on others; she was one of a kind. The community continues to donate knowing how much mother would appreciate it.

After four years of fundraising for Smile Train, this summer I had an extraordinary opportunity to intern for them. For five weeks, I got to live in New York and come to their headquarters office every day for work. It was a special experience to see the network of people work together to maximize the amount of children receiving cleft surgery. I am thankful to have been able to contribute not only from a fundraising side, but also from the business side. I learned about so many different professional roles and skills in the time of my internship. I have been lucky to have had such a great relationship with Smile Train and it is because of all the opportunity they give me to stay involved.

Without a doubt, there are times I wish I did not have to face the challenges that come with cleft. Growing up I had to go to countless amounts of doctor’s appointments whether it was speech therapy, the oral surgeon, or the orthodontist. After nine years of braces, I was convinced they were never coming off. Last summer I endured jaw surgery. To recover, I needed to have my jaw wired shut for six weeks and was unable to speak. I always wonder what it would be like to have a “normal” lip. However, I always remind myself that I was lucky to even have had this treatment. In retrospect, I am thankful I was born with a cleft lip and cleft palate because it is the reason I got involved with Smile Train.

The happiness a fixed smile will bring a child is so empowering and motivating. They will get to attend school, have many friends, and be able to participate in extracurricular activities. Every child deserves those joys in life. There is no doubt that the children around the world who receive their cleft lip and cleft palate repair surgery will go on to live a remarkable life. Smile Train is an incredible international charity that gives three hundred and fifty children and their families an opportunity to live a better life every day.

A Smile Years in the Making

Xi’an, China – For some people four years is a short period of time. For a surgeon four years is not time enough to achieve his degree. For Smile Train it is just a third of the time since it began providing cleft surgeries in China. However, for a child with a cleft, four years can change his fate. Four years helped Hua Tai’an and his family get through sadness and helplessness to happiness and hope.

Hua Tai’an was born in July 2006 with both a cleft lip and a cleft palate in Xianyang City, China. Not long after his birth, Hua’s father began to seek treatment for his son. The family used all their savings to pay for Hua’s cleft lip surgery, which still left Hua’s nose slightly misshapen. They had no money left to afford surgery to repair his palate. Luckily, not long after, Hua’s father learned of free cleft surgeries being provided at Smile Train’s earliest partner hospital in his province—Stomatological Hospital of Xi’an Jiaotong University.

The hospital’s staff was struck by the appearance of father and son when they arrived at the hospital. The child was beautiful, while the father was old, with long and shaggy hair. He seemed to be very poor. Despite making the journey with his son to the hospital, Hua’s father was still skeptical that surgery could be free in such a large hospital in a big city like Xi’an, especially because the first surgery had cost his life savings. The doctors told the father that, “Smile Train pays for you so that you can enjoy the free surgery.” The father was still rather in doubt about this, but allowed the surgery to be done.

On July 8, 2008, Hua Tai’an, who was now two years old, received a successful surgery to repair his cleft palate.

Hua Tai'an at two years old.

Hua Tai’an at two years old.

As time passed after the surgery the father found that his child was still unable to play with other children because Hua was unable to speak clearly. He was very concerned for his son. In 2010 the hospital invited the boy and his father to a speech language camp for cleft palate patients.

At the camp Hua and his father took part in the activities with the other patients and their families. Despite being with other cleft patients like him, Hua was too shy to look up or speak. His father said the poor appearance of his son’s nose was to blame. The team at the hospital recommended a second surgery to revise the cleft lip repair and help with Hua’s speech. Hua’s father was even more worried than during his first visit to the hospital. His concern was again about the surgery’s cost. The doctor’s explained to him that he need not worry because Smile Train would once more fund the treatment as well as transportation fee to and from the hospital for both him and Hua.

After many months spent debating another surgery, Hua’s father permitted surgical treatment for his son. On February 10, 2012, Hua was operated by the same surgeon who originally treated his cleft palate. The surgery was a great success and Hua was discharged from the hospital on schedule.

During one of Hua’s follow-up visits in November 2012, doctors thought that another child had entered their office due to his beautiful smile. Hua had made wonderful progress. He spoke confidently to all the staff and proudly shared his academic achievements.

Hua Tai’an, in primary school at grade one. He now has made great academic achievements and good friends.

Hua Tai’an, in primary school at grade one. He now has made great academic achievements and good friends.

Even the father’s smile had noticeably grown. He said his son had been much more cheerful, as if Hua was a different person. The difficulties of the past four years had disappeared. The father proudly displayed all the materials associated with his son’s years of treatment. Doctors were inspired when they noticed “pass cards” of the speech treatment camp that the father had cherished, but was so common to them. Hua’s father finally found that his son could be as outstanding as other children, if not more.

The team at Stomatological Hospital of Xi’an Jiaotong University was grateful and happy as well. Throughout the past four years the father had worn the same clothes every time he visited the hospital and under such difficult economic conditions the hospital staff was unsure how long the family’s persistence in treating their son could last.

It took the hospital staff a bit of time to consider what was the key to Hua’s and their success. They wrote to Smile Train this conclusion:

“Without the support of such a strong foundation, Smile Train, we couldn’t have persisted on for four years with a single patient. The poor families couldn’t have afforded the expensive surgeries many times. Without Smile Train, the team approach to cleft care wouldn’t have such development or scale as today. Without the thirteen years of Smile Train in China, how could we have seen the smiles of children with cleft lip and cleft palate?”

Smile Train Cleft Choir Pilot Speech Program Underway

New York, NYSmile Train Vice President of Programs in charge of Latin America, Pamela Wren, gives an update on a unique and promising pilot speech therapy program, Cleft Choirs.

Help Us Win a Grant to Expand Our Cleft Choir Program! Vote for Smile Train Cleft Choirs

The Need For Expanded Speech Therapy

Access to cleft palate surgery is life-changing for any child in need, but for some children, this is only the first step in receiving cleft care. Following cleft surgery, many are still at risk of suffering from serious speech problems. Within a few months of palate surgery, children should demonstrate speech development progress, but some children require additional support, such as speech therapy. There are a number of reasons that a child might have speech issues, including:

  • Speech patterns that developed prior to cleft surgery (aka, the child learned how to speak with an open palate – in developed countries, children receive surgery before they learn how to speak, so as to avoid speech problems)
  • Incomplete closure in the palate that allows air to escape into the nose
  • Dental and teeth issues that limit the ability to produce certain sounds
  • Ear problems that affect hearing and, therefore, speech development

Traditional speech therapy, which entails one-on-one sessions between a child and a specialized therapist, requires a long-term commitment among children, their parents, and trained speech professionals. Such resources are often not available at hospitals in developing countries — many patients never return to the hospital following their initial surgery, let alone return for ongoing speech therapy sessions. In a recent survey, Smile Train hospitals identified a lack of financial support, equipment, trained professionals, training, and patient compliance as the most critical barriers to providing speech therapy.

Help Us Win a Grant to Expand Our Cleft Choir Program! Vote for Smile Train Cleft Choirs

Addressing Speech Therapy Needs

One very innovative partner in South America recently approached Smile Train with a unique, cost-effective technique to offer speech therapy to children in need — the development of Speech Therapy Choirs! This idea is based on the fact that choir practice will bring together children in a social way to practice new sounds and tap their inner musical selves. This experience helps children to gain confidence, develop new friendships, and also tap into a communication skill that they never before were able or willing to explore! In addition to correcting their speech, this experience encourages children with cleft lips and palates to overcome any social barriers they have experienced due to problems with proper speech, and help them develop into happy and productive people!

Smile Train loved this idea from the start, and took the opportunity of the Holiday Season to offer small pilot grants to six of Smile Train’s most enthusiastic partners across the region. The grants have enabled our partners to work with musicians and therapists to oversee the practices and development of the children, reimburse parents children for their transportation costs to and from practice, and cover nominal music supplies and equipment. After only a few months of these grants being active, not only have we seen that the choirs improve speech patterns for our Smile Train kids, they have also helped the kids make new friends, sing proudly in front of their peers and communities for the very first time, and heal their inner scars to feel whole, happy and complete!

Choirs Happening Now

Brazil

Smile Train patients sing with Santa Claus

UNSELVA at Hospital Universitario Julio Muller — located in the interior of Brazil and offers care to about 100 Smile Train children a year. The team is led by head surgeon/cleft director Dr. Adalberto Novaes and speech therapist Adriana Lima Valente. They started practicing in October 2012 and just had a concert on December 7, 2012 to community members. The video shows them rocking out at the hospital entrance, with Santa Claus walking around bringing holiday cheer. You can see parents supporting their children as they learn to be proud and stand up in front of friends and community members as they sing in happiness about their new smiles.

Associação Beija-Flor-Funface at Hospital Infantil Albert Sabin — based in the north of Brazil, the poorest and most needy region of the entire country, this partner serves more 250 children with cleft lips and palates each year. They currently have a very long waiting list of patients in need of primary care. Smile Train is helping them with education grants so they can empower and train more professionals to join their team, and in turn be able to help more children. The lead surgeon is Dr José Ferreira and the speech program is run by Ms. Evelin Gondim. Their choir concert took place on December 11 🙂

Vote for Smile Train Cleft Choirs to Win a Grant From Uniqlo!

REPENSAR at Hospital Municipal Nossa Senhora Do Loreto — located on the outskirts of Rio de Janiero in a very poor neighborhood, the cleft program offers comprehensive treatment to all patients for free,
including speech therapy and orthodontics. This group loved the choir idea because it motivated the Smile Train children to return to the center to maintain their care and truly develop better speech and social habits. The director of the program is Dra Fatima Regina Almeida Brandao; the cleft program coordinator is Dra Ana Claudia Cruz; the cleft surgeons are Dr Giancarlo Cervo Rechia and Dr Luis Sergio Zanini, and the speech therapist coordinating the choir is Ms. Marinele Danieli Simões Dutra. The choir started practicing in October and put on a fantastic performance on December 17th when all of the kids in the cleft program dressed up as Christmas ornaments and trees as they happily sang in front of a large crowd!

Ecuador

Smile Train patients perform for friends and family as part of our Cleft Choir Speech Therapy program

Hospital del Día Niños de la Mano de Maria — This small partner hospital is 100% dedicated to serving poor patients with cleft lip and palate, and serves about 50 very poor families affected by cleft lip and palate each year. The families travel from across the country to the capital city to see them at their partner hospital. Smile Train is working with them to bring more awareness to people across the country about their program so they can then offer more services to more families in need. The surgical program is led by Dr Pablo Davalos and the coordinator of the team and the choir is Ms. Paty Penaherrera. The choir began practicing in October and even had an activity of practice at the local zoo! On December 17th, they hosted a choir concert where they all dressed up with Santa hats and performed for family members and friends at the hospital. The team and families are so happy about this that they are asking for additional support so they can continue to choir into the new year.

Mexico

Help Us Win a Grant for Our Cleft Choir Program! Vote Here

Hospital General Dr. Gea Gonzalez — This is one of Smile Train’s original partners globally, and over the 11 years of our partnership they have developed many innovative speech therapy projects to serve their poor population of Smile Train patients. They provide life changing surgery to about 300 poor patients each year under the brilliant surgical guidance of Dr. Fernando Molina and shining speech therapist Ms. Maria Carmen Pamplona. The speech program is very large at the hospital and even though they do provide traditional one-on-one therapies for their patients, the lead therapist, Ms. Maria Carmen, strongly believes that their new choir is helping the children make tremendous strides in their speech development and self esteem. She is so happy with the new program and really looks forward to continuing it for all patients for years to come!

Peru

Smile Train patients at choir practice as part of a unique Speech Therapy program

kusiROSTROS — This is an NGO that works with a number of Smile Train’s partner hospitals based in the capital city of Peru, Lima. Smile Train provides more than 700 surgeries across the country in one year. Smile Train’s largest and oldest partner in Lima is called CIRPLAST and is run by partner surgeon Dr. Carlos Navarro. KusiROSTROS applied for the pilot speech therapy choir grant because they have speech professionals who were very excited about the opportunity. As soon as they heard about the project, they started calling all of the Smile Train patients from Lima who are between 4 – 13 years old to see if they would be interested in joining the choir to develop their speech skills and also meet other children who perhaps are going through similar experiences of dealing with their scars and poor speech. About 40 children started participating in weekly choir practices. You can see the photographs of the kusiROSTROS team building decorating a special space for the children to meet, so they would feel welcome and at home at the site to practice and develop their new skills.

Please Help Us Win a Grant from Uniqlo to Expand Our Cleft Choir Program! Vote for Smile Train Cleft Choirs

5th Annual Smile Train Tri Raises $36,000

Wake Forest, NCSpecial Guest Blog written by Smile Train Donor Engagement Associate Anna Lawrence. Be sure to check out the Smile Train Tri local news coverage.

Special thanks to everyone at the 5th Annual Smile Train Triathlon to raise funds for free cleft surgery!

This past weekend, I had the extreme pleasure of attending the 5th Annual Smile Train Triathlon. Ever since she received one of our pieces of mail five years ago, Rebecca Warriner has worked tirelessly to fundraise for Smile Train. This year, the 5th Annual Smile Train Triathlon brought over 450 triathletes together to race for our cause and raised more than $36,000!

“What Rebecca has been able to accomplish over the past five years is truly inspiring.”

Sign up for the Smile Train Triathlon to support free cleft surgery for desperate kids

What Rebecca has been able to accomplish over the past five years is truly inspiring. Not only has her annual triathlon now raised over $150,000 for Smile Train programs, but she has found a way to engage her entire community to provide desperate kids free cleft surgery. It was a truly moving experience to witness so many people coming together, not only to support each other in a grueling race, but to all be so enthusiastic and dedicated to helping bring smiles to children they will never meet and hope to families worlds away from their own homes.

Every year, Rebecca has a family who has been affected by a cleft come to represent how having a child with a cleft has affected their lives and how important it is for them to have access to the medical care so many children around the world are unable to receive. This year, Jaime Cleary, along with her family, drove all the way down to North Carolina from Ohio to be that representative. Jaime’s son, Aydan, was born with a cleft and was fortunate enough to receive the surgeries he needed to live a normal and healthy life. Jaime, who is an all-girls high school rugby coach, even organized a fundraiser of her own by hosting a charity rugby game where all the girls played rugby in prom dresses. Jaime participated in the race and placed in her age group!

Rebecca, who is now 5 months pregnant, even participated in the swim part of the triathlon in between managing the booths, coordinating her volunteers, and keeping the event running as smoothly as possible.

From everyone at Smile Train, we want to send a huge thank you to all the participants in this year’s Triathlon, the Cleary family who drove the long way down to be a part of this event and most importantly, to Rebecca and her family, Richard, Polly, John, Pat and Craig for their extreme generosity, dedication and unrelenting efforts to bring so many smiles to children around the world.