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May 16th 2012
Published: May 27th 2012
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The beautiful beaches, amazing snorkeling, picturesque rice terraces, flower-petal offerings, daily traditional ceremonies, cheap and great spas and delicious food: These are all exciting and compelling reasons to come to Bali, and I intended to have a taste of most of them, as I did and will post a little here and more on my subsequent blogs. But this entry is mostly about the REAL REASON I came to Bali: to meet a special little being. (It also explores the sights along the way from Denpasar to Singaraja.)

This is not a sad entry, but one of hope and fulfillment. I share it with the intension to hopefully inspire some to take a little time at places being discovered, to search, and possibly find deeper things which may lie beyond the surface explored by us world travelers.

In writing this blog, I’m aware I run the risk of being criticized by some, but like my new American-Balinese friend Roy said, "when you put yourself out there, you gotta be ready for whatever comes, good and bad".


I posted a question on the Lonely Planet Forum: How do I get from Denpasar to Singaraja, in the NE of Bali? Answers came suggesting Bemo, Bus, and drivers. An answer come with a question: “Why go to Singaraja? There is nothing there.”

Well, there was something there, or better said, a little special someone: A 3 year-old boy in desperate need of help.


Roy and also the HFPSF recommended Putu to be my driver, and there he was at the airport waiting for me. He came highly recommended and I could feel “he was the one”, from the get go.

I asked that on the way up north, he showed me a couple of places books and tourists talk about, and so we drove by:

-KUTA and LEGIAN: Just as I had read, crowded, hectic, westernized vibe with tons of chain restaurants and fast food joints, designer boutiques, and bars. Lots of bars and clubs. Tourists walking the streets on bathing suits, many caring surfing boards. Sorry guys who enjoy this environment, but this is not how I envision about Bali, an Indonesian island about serenity and spirituality. SEMINYAK: not much different than the two neighbors, just appeared a little less chaotic. Took a quick peek at the beach behind the wall, and “voila”, enough seen of the randomly developed ugly streets of “the” party spot in Bali. (I hear that nearby NUSA DUA is a better place, but I didn’t have a chance to check it out). We continued to head north, and in the central mountain region.


JATILUWIN RICE TERRACES: Wow!! The Bali I pictured comes to life.

Centuries-old curving rice fields, with green so vivid you could almost taste and feel it, made for one of the most beautiful panoramas. Villages doted the hills and far away forest completed the great scenery. We stopped at a restaurant, to enjoy my first delicious Balinese meal, including red rice grown around the area. I ordered an Avocado, coffee and palm sugar juice: no, this is not a typical Balinese drink, but a weird concoction created by someone, which I don’t particularly recommend.

BEDUGUL MARKET in BATURITI VILLAGE: We took a short stroll through the market, where I tried the delicious mangosteen fruit and smelled the (in)famous Balinese durian, nicknamed “stinky fruit”, said to “smells like hell and taste like heaven”. Surprisingly, I didn’t think the smell was that offensive. Gorgeous orchids, tasty yucca chips, aromatic spices, fresh vanilla sticks and many colorful fruits and vegetables made this lively market an interesting pit stop.

LAKE BRATAN AND ITS TEMPLE: A gigantic banyan tree by the traditional first temple gate made it for a grand entry. We shared the grounds with lots of Indonesian tourists, most on holidays and from neighboring island of JAVA. The fog set in on the lake, covering the mountains on the other side of its margins, making the place look mystic.

• Now it was time to hit the narrow winding roads, passing through countless villages, flower and vegetable fields, Banyan trees, monkeys by the roads, women caring enormous baskets of vegetables on their heads, roosters on straw cages and house compounds, each with their own small temples.


Prior to my trip, I searched for a sick child in need of medical care that I, in name of Helping Children Heal (asmall NGO I co-founded with2 friends), could meet and help.

I received a picture of a 3 year old boy with a disfigured face, resembling a very severe burn. It looked devastatingly painful, and I found out the family had no means to pay for medicine or medical care.

After doing much research with US doctors and on the web, the diagnosis was HARLEQUIN ICHTHYOSIS (HI), an extremely rare genetic, congenital skin disease. One in a million is born with it, and most die within days of birth.

KOMANG is a miracle, surviving a deadly disease without medical care or proper nutrition.


I searched on the Lonely Planet for places where foreigners could volunteer in Indonesia, looking specifically for institutions helping children and linked to causes related to health care. I found three and wrote to them, telling a little about HCH, its vision and mission and explaining that I was looking for a child in need of help. Two institutions wrote back, stating they would be willing to locate a child for HCH. One foundation explained that several kids were in need, but that they worked on a community basis, and had not located a child yet. A foundation founded by HELEN FLAVEL found a child, wrote about his condition, the very poor living conditions of his family, including inability to pay for health care and treatment. They also sent pictures of Komang, and there was no doubt this 3 year old needed urgent help. I looked up the foundation at the internet, to establish its credibility, and was impressed by all it has accomplished. Helen Flavel is an extraordinary Australian woman who has done a beautiful job at establishing the foundation together with two Indonesians, Mr. Nyoman and Mr. Putu John. I started extensive phone calls and email communication with members of the Foundation.


By late afternoon I was warmly greeted at the HFF. After dinner,the director did a pp presentation about the HFF’s mission, projects, and accomplishments. Very impressive! We then discussed the itinerary for the next day.


We headed to Komang’s home passing through innumerous villages as we drive up the winding narrow mountain roads. After about 2 hours we arrived at the very small village. We were received by the man, the foundation calls “front liner“. He is like the headhunter who looks for families and villagers in extra need of help, needing sponsorship from donors or projects for the foundation. We set on the floor, as it the costume here, and were offered coconut and yucca sweet rolled up in banana leaf, coffee and tea. Offering your guest whatever food and drink you have is the norm here.

After a few minutes, we hiked up a steep narrow trail for some 20 minutes, to reach the miniscule 2 room home where Komang lives with his Mom and Dad. His 2 teenager brothers are away. The little home was built by the foundation, for a cost for around $2,000.


The 2 pictures I had received before, showing only his face, as heartbreaking as they were, did not prepare me for what I found. From the distance I see this 3.5year old boy who was the size of an 18 month old infant. Getting closer, I face this tiny boy, not only very disfigured and but who looked starved. I don’t recall seeing anything similar, even in books. I don’t know where I found the strength to pursue to approach him and his family.

The cracked, dried skin became secondary to the overall desperate condition this child was at. His enormous, red and tearing eyes and the state of severe malnutrition were shocking. His arms were no more than an inch around, too weak to hold anything. The fingers were deformed, only the thumbs formed enough to be identified as finger, all too weak for grasping. The legs were 2 scaling twigs, ending on deformed feet with no toes. I learn Komang can’t walk. He seats all day, on the hard floor, covered by a thin rug. There were flies onhis face, arms, legs....

I ask:” Can he talk”? “Yes, he can”, and soon I was to hear him complain about the many flies around his arms and face, as he scratched them away. When I suggested that Komang’s hat was too warm and should be removed, the little one protested with words followed by a loud cry. The clothing he was wearing was hot (jeans and shirt), wrong materials for his condition. But I could tell they were his best ones, and put on by his parents in our honor.

I was shocked to hear that he has not been using any medicine at all, not even traditional, for a long time. When it was the last visit with a doctor, I asked. Too long to even remember. With a dermatologist, never. Not because they are not caring parents, but because they can’t afford the $10 visit, and until now, there was no one to turn too.

I don’t have enough kind words to use to describe Kumang’s parents. Loving, caring, attentive, and humbling accepting of the help being offered. Both parents answered to my many questions and accepted advice I provided, in accordance to the medical recommendations I received in writing from doctors in the US, and all appropriated for has Harlequin Ichthyosis .

Nutrition is my field, and no doubt this child is severely malnourished. The disease itself demands an increased amount of calories and fluids to be consumed. But he eats 3 small meals per day, consisting of rice and vegetables. Not a single good source of protein, primary for lack of money to purchase meat of any kind, and second due to ignorance

KOMANG IS TAKEN TO A DERMATOLOGIST: First time since he was born 3.5yrs ago.

We drove Komang and his family to the only dermatologist in Singaraja, the first he has ever seen as they couldn’t afford the $10 visit and any treatment suggested for that matter.

We waited for almost an hour at the terrace, waiting for our turn. It was already getting dark and all the other people starred at Komang, many asking questions. The parents didn’t seem to be bothered by that and Komang was very well behaved, even during the long drive. Komang’s turn came and I was introduced to the doctor who preceeded to exam the little boy… for all of maybe 5 minutes tops!!!!!

He confirmed the diagnosis, agreed with all the creams, ointments I brought from HCH. Any questions asked got the answer: “I’ll see at the one month follow-up”. In a developed country, this child would be checked into a hospital for nutrition replenishment and skin care, without a doubt.

We headed to a veranda nearby, where we sat on the floor to write down all the instructions for the use of the medicine, with Mr. Nyoman and Putu John translating to Indonesian. We packed everything in 2 large bags and I added a smaller one with toys I had brought from the US.

I couldn’t believe to see that little Komang, his parents and the bags of supplies were going back to the village, in the dark, on 2 motorcycles from neighbors!!!!

I said goodbye and as we drove away and I look through the rear window, I felt a void never experienced before. I don’t have the words to describe the feeling in my heart. I fell silent. Nyoman asked if I was okay. I answered, I guess I am.


It was late once we got back to the foundation. It had been a hot and humid day, filled with feelings tossed between helplessness and hope. I showered, almost hoping for the cleansing to go deeper than the surface, washing away the uncertainty I found within. Retrieving to my little room after a quick dinner, I drawn HCH plan #4 for this mission (#1 was finding Komang, #2 meeting and assessing his needs, #3 Taking him to a specialist).

What can HCH do for this child now?

With funds from HCH I brought medication for the first few months.

#4: What else can HCH do here and now? Local purchases to aid his health and improve his living conditions.

The day after the doctor’s visit, Putu John and I went shopping with funds from HCH:

-NUTRITION: Komang’s starved body needs good complete nutrition to get stronger and be able to “feed” the demanding disease which is Harlequin Ichthyosis (HI). “Normal skin consumes 130 calories per day; the skin of people with HI, 1000 or more calories/day”. Komang’s caloric intake is extremely low, not meeting the veracious appetite of his skin. To add to the unmet caloric needs heightened by HI, his diet is very unbalanced, mostly rice and vegetables, lacking primarily protein and calcium. I bought 44LBS OF SOYBEAN, 5LBS OF RED BEANS, SEVERAL EXPENSIVE CONTAINERS OF BABY MILK FORMULA AND 10 CHICKENS TO LAY EGGS to increase protein intake and instructed the parents on how to slowly increase his intake to prevent overfeeding on the first days. A BLENDER, CUPS WITH STRAW and 300, KID’S DIVIDED PLATE WITH LID, 2 BATHING TUBS, 2 ROTATING FANS, COOLER CLOTHING and some disposable diapers for travels to doctor’s visits


THERE IS NO PETROLEUM JELLY IN BALI AT ALL. WE NEED TO RELLY ON TRAVELERS TO BRING TUBS OF VASELINE. We need a continuous plans, help little Komang. To learn about it and contribute, if you wish, see the link: You can also visit the HCH Facebook page for updates.


Poor countries, such as Indonesia, does not offer free education or medical care to its people and the cost is prohibited for those in the lower economic levels. So, innocent kids like Komang, go untreated and suffering without much help and hope.

I (We) can’t change the world/health of all children in need, but I (we) can make a difference, one child at a time. This “mission” took more time and efforts than the usual ones I have been engaging on, as I visit other countries, and it has seemed overwhelming at times, but no doubt it has been fulfilling and I have learned a lot through helping, about the country, the people and their culture and ways.

TO FIND A CAUSE OF YOUR OWN: find it, opportunities to give a hand are everywhere. If you search, you will find.



Additional photos below
Photos: 25, Displayed: 25



The fruit to talk about: "Smells like hell, tastes like haven"

27th May 2012

To Patricia somewhere
Patricia, A very moving piece from your blog. Unfortunately, for many it takes learning of Komang's situation to appreciate how fortunate we are, if possessing good health, money in the pocket and a home. I will be interested to follow Komang's progress and assist he and perhaps others in dire need of help. Nick.
27th May 2012

Thanks Nick
good to know little Komang's story is touching hearts. You can help to support his cause (and the other boy I found in a village nearby), by spreading the word by sharing this link: To receive updates, befriend HCH - Helping children heal on facebook, and visit the HCH website as above. THANKS AGAIN FOR YOUR ENCOURAGEMENT. (PS: Are you back from Brazil yet?)
27th May 2012

A beautiful child and a beautiful heart
Patricia, i am not normally a fan of bali but your blog really touched my heart. What a wonderful thing you are doing for this lovely little boy. Bless you and Komang. Hope to hear updates :-)
27th May 2012

Komang is an angel
Cindy and Nicoletta. Thanks for your support. I took a chance in publishing this blog, not knowing what the response would be. If not done so yet, to receive updates, subscribe to my blog, befriend HCH - Helping children heal on facebook, and visit THANKS AGAIN FOR YOUR SUPPORT AND ENCOURAGEMENT
27th May 2012

Beautiful Blog, Patricia.
Thank you for sharing your truly human experience. Your life is full of love and light. Helping Children Heal is such a selfless act of kindness.
27th May 2012

Hi Patricia, I was very moved and sadened by reading your blog. However, I admire what you have done for Komang and have donated to show my support. Best wishes Máire
28th May 2012

I'm so glad to have gotten this comment from you. I was wondering who you were and how to thank you. I saw on pp that you are from Europe. I THANK YOU ON KOMANG'S behalf. We're trying to make arrangements for him to get supervised medical care. ;-)
28th May 2012

The world needs people like YOU, many people like YOU. Thank you. Hugs from Argentina.
28th May 2012

...Like Us.
Graciela. Those who give encouragement play an important part on the circle of helping. Thanks for your support.
28th May 2012

Patricia you have a big heart
Thank you for sharing this story. We will make a donation today. Thank you for addressing his nutritional needs in additional to all his other issues. I hope you will continue this good work. We are going to Nepal in the fall and hope to do some of the same kind of work. You have a good soul. Carry on.
28th May 2012

Having Big Hearts
Thank you Dave and Merry Jo for the encouragement and donation. We are so fortunate to be able to walk, see, travel... experience life. I'm so glad you'll help in Nepal, a country with so many needy children. (Did you see my entry on the orphanage in Nepal?). Wishing you all the best, P.
28th May 2012

thanks for sharing this with us - we hope you are always happy & well ...
29th May 2012

Update on Komang...
Got first update on "our little boy". He is doing much better now with better nutrition and hydration, and also the creams. Trying to feed himself, no more flies on his wounds (fans helping), and doing "poo poo" without struggle. Hopefully more good news will keep coming. We are trying to get him to a children's health care facility. It will be costly and probably he will stay there for a while, so please spread the word. We need all the help we can get. Luv, Patricia
26th August 2012

Patricia I by chance stumbled on your blog. I wanted to let you know that the news of Komang and Kadek who both have HI reached me 2 weeks ago. You should rest assured that your work here is not done and forgotten because many people are helping out as the word travel. I will be traveling to Bali in a few weeks time and have organised a few suitcases of Petroleum Jelly, and I'm just one person. Helen is one person, as is John and Pak Nyoman. Putu John's email signature: "As one person I cannot change the world, but I can change the world of one person." - Paul Shane Spear I have feeling you're over your quota :)

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