The Smile Foundation in Bali is on a mission to bring smiles to children with facial disabilities in Indonesia.
Founded since 2005, The Smile Foundation in Bali, or Yayasan Senyum in Bahasa Indonesia, gives free facial operations to children born with cranio-facial disabilities. These patient disabilities include cleft lip and palate, and a wide variety of other conditions such as Goldenhar Syndrome, Apert Syndrome and facial tumours. Mary Northmore, the foundation’s founder, has been on a mission to change these children’s lives by giving them not only the much-needed facial operations, but also love and care.
Human Asia has the following exclusive interview with Mary.
Tell us about the beginning of Smile Foundation.
Mary: In 2005, I was approached by an Australian doctor who wanted me to establish a foundation for people with cleft lip/palate and other cranio-facial disabilities. I didn’t really understand the problem at that time but I trusted the doctor who asked and I had just finished writing a book about my late husband, so was ready for a new challenge. So, with help from some wonderful friends, I created the Smile Foundation of Bali.
In the beginning we had no funds and were always begging but slowly we started finding some wonderful donors, many of whom are still with us now. Once a Foundation has been established and has a good reputation for delivering, then it becomes much easier.
Tell us more about the children in your care, and their backgrounds.
Mary: The patients come from all over Eastern Indonesia, wherever we can find them. Our outreach workers or partner organizations coordinate with us to send patients, each plus one family member escort, to Bali for treatment. A generous donor gave us a house near the main Public Hospital in Denpasar, the capital of Bali. Here patients have a room, food, care from our team of staff before and after an operation until the Doctor says they can go home. We have 11 rooms in the Smile House to accommodate them, along with our offices and a kitchen.
What life challenges does one face in having a cranio-facial disability?
Mary: The face is the first thing people usually see so having a facial disfigurement can be very traumatic for both the sufferer and those who see them. This is not just a cosmetic problem as these disabilities can severely impact on health, for example a baby with a cleft palate cannot suck properly, creating a very difficult challenge for the mother trying to feed her baby. This can lead to malnutrition as milk comes out of the nose, or lung problems as milk goes down the wrong tube. Facial tumors in an adult can be very dangerous if they lead to inability to eat or chew properly, leading again to malnutrition.
We often find that our patients need ‘feeding up’ before an operation can be performed, in order to ensure they are really healthy.
People with serious craniofacial problems are invited to attend a clinic which we hold twice a year. Here local and Australian experts determine the appropriate care plan for our patients. If facial reconstruction is needed, the patient plus escort may be invited to go to the Australian CranioFacial institute in Adelaide, Australia. This program offers free medical treatment for up to ten people per annum and in this case we take care of all the travel plans for the patients and an escort, who may be there for up to three months. This wonderfully generous program is sponsored by the Government of South Australia.
Does Smile Foundation provide long term support for the children beyond facial operation?
Mary: It is very important to have a longitudinal approach to this type of healthcare as the head is very complex and changes as the child grows. Certain operations, for example orthodontic treatment, can take years to manage. We keep patient records very carefully, and recall patients for checkups as and when needed.
We also offer speech therapy for our patients. This can be very important for cleft palate patient who have learned to speak while the palate was open and therefore do not speak as clearly as they might.
We are also aware of the difficult hygiene challenges that exist in remote villages, so this is a good opportunity to teach healthcare to our patients, such as how to brush your teeth, how to prepare healthy food – and our wonderful staff also teach skills such as making handicrafts, English language, computer skills, etc.
What is the biggest challenge for the Smile Foundation now and in the foreseeable future?
Mary: We are always concerned to ensure the best possible care for our patients although, being a social welfare organization, we are not medically trained, so we do staff training to increase our capacity.
We are very concerned also to locate people who need our help. They may live in distant communities and not know we exist, so we have to go and look for them. For this we employ local people who we train up in order for them to provide appropriate support to enable patients, families, and communities to understand how we can help them.
I personally have a sense of urgency as I am very aware that people may die before we find them, so I am always looking for funds to facilitate this, as well as increasing our management capacity to handle the work.
Another important aspect of our work is the focus on sustainability. It is far preferable to support local health services than depend on foreign doctors. So we have supported a local Plastic Surgeon and Neurosurgeon to go to the Australian Cranio-Facial Institute in Adelaide for further training.
Tell us more about how people can get involved and help the foundation.
Mary: Funding, funding, funding – the more funds we have, the more people we can help. Statistically 1 in 600 babies are born with a cleft. If we extrapolate that to the Indonesian population we can see that many hundreds such babies will be born every year. They all need help!
We want to find out more about Mary Northmore
Mary, tell us more about yourself
Mary: Born in England, my parents were a government employee and a housewife who knew that education is the key to a decent life. I qualified as a Librarian but wanted more travel opportunities so became an English teacher, working in Italy, Greece, and Hong Kong for the British Council. I had a short holiday in Bali and loved it.
Here in 1984, life took an unexpected turn when I met the man I married in 1989. Abdul Aziz was a very prominent Indonesian artist who had studied in Rome and then settled in Ubud,Bali. Finding that women artists had a very difficult struggle to have their work seen and sold, in 1991 I started Seniwati, the first art gallery for women artists in Asia. The gallery closed in 2012 but the organization still continues, in a new form. Aziz passed away in 2002 and I spent much of the next 4 years compiling a book about his art and his life.
So are you an Indonesian citizen?
Mary: When Abdul Aziz and I married I became an Indonesian citizen, so Bali has been my home since 1989. I really appreciate that I can do something useful to support this wonderful country in its drive to development.
What life lessons have you learned from starting this foundation?
Mary: I have learned that my parents were totally correct in saying that education is the key to a good, useful life. I see that all over the world mothers love their children, but only the very fortunate ones have access to decent health care for children with problems.
I have learned that any organization is only as good as the people who support it, whether as staff, donors, supporters, partners, and that a useful organization must not depend on any one person – we are all expendable. So this is not “Mary’s Smile Foundation” – it is “Our Foundation” and belongs to the larger community for as long as it is useful.
Any regrets in terms of what could have been done differently?
Mary: I just wish I could have learned faster. It’s been a steep learning curve for me, and the faster we can work, the more people we can help.
What advice would you give for people who want to start a foundation or charity?
Mary: Know the culture and the language. Identify the need that is not being met and make it your passion. Then learn the government rules that you need to follow while keeping your independence. Leave your ego at the door and know that this belongs to the people, not to you. Do your best and forgive yourself your failures.
Thank you, Mary.
Visit Yayasan Senyum (Smile Foundation) of Bali : http://www.senyumbali.org/