News Event « Yayasan Senyum Bali | Bringing Health Care To People With Craniofacial Disabilities

The Smile Foundation of Bali

2010-06-28 / HEART OF BALI

The Smile Foundation of Bali (This article is published in THE MAG 26 – JUNE 2010)

by Rahman

Yayasan Senyum Bali

Yayasan Senyum Bali (The Smile Foundation of Bali) is an independent, non-profit organization striving to bring health care to people with craniofacial abnormalities. It was founded in 2005 by the Ubud resident Mary Northmore, who is also the Foundation’s Chairperson. The Foundation has an honorary board and seven staff, who look after all administrative work and patient coordination for hospital admissions.

The Foundation deals with patients suffering from disabilities such as cleft lip and palate, as well as a wide variety of other craniofacial disabilities. Most of these patients come from the mountains of Bali and other islands in Eastern Indonesia, where appropriate medical treatment is extremely unlikely.

Patients are housed at the Yayasan Senyum Bali Smile House in Denpasar while completing pre-operation procedures at either RSUP Sanglah or at private hospitals in Denpasar, where Bali’s two Plastic Surgeons conduct their surgery. The Foundation’s Patient Coordinator assists the patients through the pre and post operative procedures. After their surgery, patients spend two or three days in hospital for postoperative care then return to the Yayasan Senyum Bali Smile House for a similar period of recuperation before returning to their villages. During their stay at the Yayasan Senyum Bali Smile House, patients and their escorts (i.e. one family member) are provided full board.

All financial aspects of Yayasan Senyum Bali are administered by a qualified accountant, and independently audited on an annual basis. The Foundation runs solely on donations and the support of the volunteers. Yayasan Senyum Bali works to raise funding for craniofacial surgeries and to establish partnerships with various organizations and medical facilities to provide logistical and medical support for the patients.

These include:
•    Return transport to attend hospital appointments.
•    Accommodation at the Yayasan Senyum Bali Smile House in Denpasar – before & after operations in Denpasar.
•    Emotional and logistical support as patients and their attending family members progress through the health care system.
•    Making all necessary arrangements including applications for passports, visas and flight bookings to Australia for those severe cases in need of surgery at the Australian Craniofacial Unit in Adelaide, Australia.

Smile Shops

Yayasan Senyum Bali operates two charity shops (The Smile Shops): one in Ubud, which has been in existence since 2006 and another in Denpasar, opened in March 2010. These Smile Shops sell donated goods both new and used and have been highly successful in assisting in the generating of funds. The funds provided by the shops cover all Yayasan Senyum Bali administrative costs. This means that all donated money is spent on directly helping patients. Both charity shops are managed by a shop assistant and a number of dedicated volunteers who work various rosters to enable the shops’ smooth operation.

Foundation bringing back the smiles of children

The Jakarta Post, Jakarta | Wed, 10/03/2007

Trisha Sertori, Contributor, Gianyar

In a world where appearance is a passport to jobs, marriages, first dates and social acceptance, having severe facial deformities can bar people from ever entering the life most of us take for granted.

Add poverty and little access to health services on top of disabilities such as cleft and lip palates or severe deformities, such as the Elephant Man Syndrome or Goldenhar Syndrome, and the chance for sufferers from remote regions in Bali and Lombok to receive medical treatment was, until a couple of years ago, almost nil.

Today these are the people Yayasan Senyum or the Smile Foundation seeks to help across Bali and Lombok. People who, if born in another country, would have had these disabilities treated as babies; others caused through infection would never have occurred.

“”The simple act of eating and drinking can be denied to these people; looking in the mirror, putting on makeup, feelings of being punished for unknown sins, being disadvantaged in everything. The ideal of beauty operates all over the world and aberrations (like these) are not well received,”" said long time Bali resident Mary Northmore-Aziz, who two years ago, with an ever-growing band of volunteers and supporters, established Yayasan Senyum. The foundation helps arrange reconstructive surgery for sufferers of severe facial disfigurement and cleft and lip palate across Bali and Lombok.

“”Yayasan Senyum began two years ago when Dr David David of the Australian Craniofacial Unit, asked me to set up a foundation to track down patients in need of facial reconstruction,”" Northmore-Aziz said. “”Senyum then guides people through the process of pre-and post-operative assistance, getting some to the Adelaide Women’s and Children’s Hospital in South Australia and others into Sanglah or Dharma Yadnya hospitals in Denpasar,”"

Patients and a family member are housed at the foundation’s Smile House in Denpasar during trips to the city for medical treatment. Rental for the Smile House was donated by local Balinese Sanford Chee and opened in January 2007. The house acts as a halfway home for patients with the family atmosphere helping to reduce the stress and fear of the hospital process.

And that process can be terrifying for patients and their families from remote villages who may never have left their homes and are already socially isolated and traumatized by their facial disfigurements.

“”These people are often without information. Many can not read or may not speak Bahasa Indonesia. Poverty is a lack of any resources. Not just money, but including the information we need to cushion the hard times. Because of that lack of information when these people decide to have surgery they only know that decision will be the forerunner of a very frightening and painful experience,”" said Northmore-Aziz.

Walking hand-in-hand with patients through the chaos of hospital registrations, passport applications, visas, blood tests and more is one of the many ways Yayasan Senyum cushions the fear and confusion faced by patients at the foundation’s Smile House.

“”Smile House has a coordinator, Oki Made Widawati. She walks people through the process; the reading of admissions forms, how to go for blood tests, where and when to go to X-Ray. These things are all very frightening and confusing. Having the coordinator journey through this with patients eases those fears,”" Northmore-Aziz said.

She adds that patients who arrive in Denpasar face not only the fear of surgery and possibly travel to a hospital in a foreign country, but also the fear of being far from home, possibly with language barriers, different religious practices and genuine culture shock, all these fears are calmed by Smile House’s coordinator.

“”There are also the irrational fears felt by not only patients, but also by family and community. We had one young girl who was in hospital in Adelaide for so long a rumor went around her village that we had sold her. Having a family member so far from home can be very frightening. Trusting people they do not know; setting out from a village into the unknown,”" said Northmore-Aziz of the trauma faced by patient’s communities.

But for the dozens of people helped by Yayasan Senyum, once the rounds of operations and hospital stays are over, life never looked so good.

“”Rusmini had lost much of her cheek bone and jaw to infection when she was a child. Today she works at the (Smile House) center and wears lipstick. She never wore lipstick until she was 32 years old. She did not want to draw attention to herself and always covered her face. Surgery gives these people a new life. They can’t stop smiling and they chatter nonstop, they are so delighted with their lives. They are filled with confidence, pride and courage,”" Northmore-Aziz explains.

Bali ‘op-shop’ generates aid for reconstructive surgery

MARGARET DUNKLE
UBUD, BALI

The Brunei Times, Monday, September 3, 2007

OPPORTUNITY shops (in America, “Thrift Shops” ) are a popular institution in much of the English-speaking world. Small shops tucked away in suburban shopping streets, crowded with a jumble of household items; pots and pans, teacups, baby clothes, ladies’ coats, shoes, knitting needles…

Here in Bali, we have our first “op-shop”; naturally, in Ubud, where most things seem to happen. Founded in December 2006 and initially opened 3 days a week, it is now up and running every day except Monday, staffed by a team of dedicated volunteers, both Indonesian and from overseas.

The function of an op-shop is to recirculate usable goods that someone no longer wants to other people who can use them. Sooner or later, you may find the very thing you have always wanted — even if you did not know you wanted it until you saw it! A confirmed op-shopper can tell you precisely what shop, in which shopping centre, is likely to have pretty silk shirts, ceramic teapots or embroidered pillow cases. The charm of op-shops is the unexpected. You can sift through piles of plates and racks of frocks, and be sure that there is a treasure hidden somewhere just for you.

Prices are very low, affordable for most people, and you never know what you may find. All goods are donated, the staff work for free, and the profits roll in. What happens to the money? All op-shops exist to finance some local charity; a hospital, a home for old people, a shelter for lost pets.

The Bali Op Shop is called the Smile Shop. It is a part of “Yayasan Senyum”, established in 2005 at the urging of cranio-facial doctors from Australia and Indonesia. “Yayasan” defines us as a government accepted , non-profit organisation, while “Senyum” (smile) describes the reason behind the shop: to bring smiles to the repaired faces of children who would otherwise spend their lives with gross physical malformations.

Most of our donations to date have been from Western visitors, who bring us the clothing and household goods they do not want to take back to their home country; classy little frocks with designer labels from New York and Milan, and beaded and sequined chiffons from Bali’s best boutiques, too tropical to wear in London or Paris. As in Australia or America, we attract a regular clientele for these luxury items, women with expensive tastes and international backgrounds looking for a bargain, and the fun of the hunt.

Increasingly, however, we are receiving humbler and more useful goods from local shops unloading old stock, and hotels recycling towels and sheets. Our customers for these are a fascinating mixture: expats on long-term visas to Indonesia and limited budgets, short-term tourists looking for thin t-shirts and skirts, and a growing number of local Balinese who have discovered that what we offer is good quality, inexpensive items they could not afford to buy in retail shops. (An example is a recent donation of used, but good, bed linens from a hotel group, which were snapped up by local families within hours.)

We sell everything — and the money goes to the Smile House.

Together, Smile Shop and Smile House bring medical care to children born with cleft lip, cleft palate, and other head or facial defects. Children from poor families, who could not possibly afford the cost of travel and surgical treatment, are brought from their home villages for assessment at Sanglah Public Hospital in Denpasar, and then either sent home to await an appropriate time for surgery, or operated on within a few days, staying with their family members in the Smile House until sufficiently recovered to return home. Severe cases beyond the scope of the local hospital are sent to a specialist hospital in Adelaide, Australia, where a team of international doctors work together to bring the child a normal, healthy life.

For five-year-old Ketut, born with the rare and drastic Goldenhar Syndrome, this meant nearly two months in Adelaide’s Australian Craniofacial Unit, where a team of fifteen specialists reconstructed her face, implanted a hearing aid, and helped her learn to speak.

Ketut’s treatment, like that of all the children, is free, all costs being paid from the profits of the Smile Shop and from private donations. Patients come from remote villages in Bali and the nearby island of Lombok, and their families may have to travel many hours or days to get here. They arrive dirty, fearful and exhausted, and the Smile House offers sanctuary from the journey and hope for the future.

If you should visit the Smile House, you would find a small villa in Denpasar, around the corner from the hospital. You would probably be greeted by Rusmini, a slight, shy woman from Lombok, and one of the earliest patients of the yayasan. Rusmini was born with a cleft lip and palate so severe she could not speak, and could only eat by pushing food through a hole in her cheek.

Although most patients are young children, and Rusmini is in her twenties, her condition was so shocking she was immediately flown to Adelaide for treatment.

Now, a year later, Rusmini can confidently look people in the face; her own face is almost normal, she has learned to speak and repairs to her jaw and teeth will soon be completed. Instead of being a burden to her family she now manages the complex affairs of the Smile House, greeting visitors, cooking meals for them, reassuring them from her own experience, and demonstrating in her shining, happy person the miracle that awaits each one.

Lombok 70 Project helps kids get craniofacial surgery

Lombok 70 Project helps kids get craniofacial surgery

Patients with cleft lip and palate problems can face isolation, trauma and difficulty speaking and eating. This condition can be addressed successfully through surgery. However, the cost of surgery can be prohibitive.

With assistance from a collaboration of partner organizations, including the Consulate General in Bali’s Direct Aid Program (DAP), 70 young children from poor families in Lombok will receive essential surgery toward rectifying their craniofacial conditions.

The Consulate General’s contribution of Rp 36.6 million will be channelled through Bali-based Yayasan Senyum, an NGO whose mission is to bring health care to craniofacial patients. The funding from the Australian Consulate General will cover pre-operation costs for the children and their parents. Other major partners in the project include Rotary Nusa Dua, who will fund medical costs, and Yayasan Kita Peduli Lombok.

Surgery will be carried out at the Sanglah Hospital in Bali.

On December 1, Consul General Mr. Bruce Cowled and Vice Consul Ms. Adelaide Worcester welcomed to Bali four of the 70 children who will receive this life-changing surgery through the Lombok 70 Project.

The Smile Foundation of Bali

Foundation bringing back the smiles of children

Bali ‘op-shop’ generates aid for reconstructive surgery

Lombok 70 Project helps kids get craniofacial surgery

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