How selfish of a parent to take their young children to travel around the world. How can they put their children into danger? How can they make them live in poverty while they could live in wealth and security? Continue reading
Discover the world through children’s eyes: Live the wow factor
Backpacking around the world, that is how I explored our wonderful earth a few years ago. With the birth of my daughter Malia Luna in 2011, it was clear that I wanted to show her all the beauty one day. Taking her on a great adventure, and thus broaden her horizons. Continue reading
¨I desired I were dead, thinking I would be better off that way instead of living in the bitterness of rejection.
Rojan J. Pajarin is a good looking man, husband, father of two children, a marathon runner, hard working man who empowers cleft children, cleft grown ups and their families. I met him in Manila, were he is working for NCFP, when I brought 10 Bohol cleft patients for surgery to Manila.
From the first moment I was impressed how organized Rojan is, and how dedicated he is to all his cleft patients. Rojan himself was born with a cleft lip and cleft palate. He had to experience how cruel people can be…cruel for no reason.
Rojan was born into a simple fisherman family and he always had the hunger to achieve more. He made his way to Manila were he works for NCFP supporting patients who have the same condition that he suffered from before. Rojan knows first hand, that cleft is not fixed with an operation…there is so much more.
Rojan is running to raise awareness for complete cleft treatment. Soon we will hear more from this ambitiousness man.
I am so proud and honoured that Rucksack Coach is on his runnig shirt!!!
Here is part of his story:
CLEFT CARE: A CONTINUOUS HEALING by Rojan J. Pajarin
I want to share what I have been through in receiving complete cleft care from Noordhoff Craniofacial Foundation Philippines Inc. (NCFPI). I cannot forget the first time I met the NCFPI team in my province at Daet, Camarines Norte. That day was like rising from the dead. I had many setbacks and disappointments in the past due to my cleft condition that I even wanted to die.
I had my first operation in a cleft mission in Albay when I was five years old. I was diagnosed with an incomplete cleft on my lip’s left side and with a complete cleft on my palate, both of which were repaired. I had my second operation in NCFPI through Dr. Xenia A. Velmonte on October 2, 2007 to redo my cleft palate surgery because I still had a fistula after my first surgery. Despite the success of this surgery, I still had difficulty with speech. Our speech pathologist said I had velopharyngeal insuffiency, so I had another surgery last May 8, 2008 to fix that. On April 22, 2009, Dr. Bernard Tansipek with Dr. Glenda de Villa, Dr. Xenia Velmonte and Dr. Sam Noordhoff worked together for a surgery to revise my lip and nose.
I experienced much pain as I went through all these surgeries. In my last surgery, the original plan then was to do it with local anesthesia as an out-patient, yet eventually, it had to be done inside the operating room. The last thing I remembered seeing was the operating room lights. I also remember hearing the voices of the nurses and doctors… I lost my consciousness but I was sure that the surgery will be successful. I had no relatives with me in the hospital then, but the NCFPI doctors were there, and I trusted and believed in them. NCFPI doctors are molded by the best schools, trainings, advisers and experiences, and through them, I felt joy in God’s blessings despite my unpleasant experiences.
Cleft is not as bad compared to other inborn illnesses and may not even really be a disability if it will be treated early. In my case, the medical intervention was too late. I say this because I have seen similar cases of cleft conditions like mine in my 7 years of working at NCFPI and I can say that they were treated successfully. Why is it that my first surgeries were not successful? I do not know what really happened. What I know today is that cleft treatment needs regular follow-up consultations after surgery.
I now understand the difference between a one-shot cleft mission compared with a center-based cleft care treatment. In most missions, the doctors come and then leave after they have finished all their patients’ surgeries. No follow up consultations can be done. That approach is not bad as long as the operation is successful, but in my case, there was still a small fistula or hole in my palate area. My parents did not know what to do with this problem, where to go, or who to ask. We found that going to hospitals was not the answer because the doctors there just told us that the one who should remedy it is the doctor who operated on me. Perhaps if we had the money, my parents could have had me operated on in a hospital where I could go for regular consultations. I grew up with that small hole and it caused me great suffering. But now that I have known NCFPI, even if it is quite late in my life, I am thankful that I found the remedy to my problem. In a center like NCFPI, a cleft patient can go there as long as they need to and they can get the best care possible even as soon as he is born.
After my surgeries, I attended speech therapy sessions with the NCFPI speech pathologist Sir Paolo Sison III. He taught me the techniques of proper speaking after an assessment of my speech problems. I am also blessed that our volunteer dentists took care of my teeth, especially Dr. Rachel Anne Santos. I am also very thankful to our orthodontists, headed by Dr. Janet Pandan, who patiently work on my misaligned teeth. She continues to help cleft patients with their teeth until they get the correct “bite” or occlusion. I am also proud of our surgeons, and many of my friends with craniofacial conditions at NCFPI underwent successful jaw alignment surgery or orthognathic surgery to improve their facial appearance.
The face of a person with a cleft truly requires much work from many people and not just the surgeon. The parents, especially the mothers, have to support their children with cleft in their totality, especially emotionally. I realized that cleft treatments may have an end but people with cleft also have to continue striving and healing themselves. I realized too that the greatest solution for a person with cleft is self-acceptance, and this is the starting point to set oneself free, to move on beyond your own perceived limitations and fears towards a happier life.
Rojan with his NCFP collegues and the little Lulu from Rucksack Coach. They took cleft patients on a very special day out in Manila.
Frontpicture Copyright: Ann-Kathrin Lange
Our first mom and daughter Backpackingtour was through Thailand in 2012. At that time I was not so sure myself whether and how that would work. I just had to try it. Consciously I hardly told anyone until the tickets were booked. I just didnot want to listen to well-intentioned concerns and advice of others who had never done anything like this, but had surely a lot of reasons why a mom should not go with her 1-year old baby on a backpacking tour.
Nearly three years later, in 2015, we came by chance to the same beach in Koh Phangan in Thailand, where we had been in 2012. A good time for a résumé.
Much has changed. Meanwhile, my baby, is no longer a baby. She has traveled halfway around the world and for almost a year now w´re a mom-daughter team on a charity tour around the world. We live and support they who need our help. It is a journey into trust, that carries so much good in it.
The well-intentioned advices on what is not possible I hear less and less. Such a trip as we do, have probably very few experienced before us. And we prove every day what is possible when Mum and daughter are on their own.
How we met
I was told about a boy with cleft in Inabanga, which is around 1 1/2 hours away from Pangangan Island. It is complicated to find the house, so someone had to accompany me. We prepared for the journey and I asked to call up the mother to make sure she is there when we arrive. It was a very hot day. Malia felt asleep in the car. I carried her to the hut where I met Charles for the first time. Continue reading
Charles, Charly, Charlsy. Who would have thought that this boy would grow so fond to me.
Charly’s development in the past 5 months makes me so incredibly proud and confirms my belief that what we are doing for months, my 3 year old daughter and I, made a difference. We touch the hearts of people and they touch our hearts. We all have changed by this experience. We reached our limits and helped each other to keep going. Continue reading
has brought so much enthusiasm and motivation. Not only for our cleft families but also to so many other people in need, who are support by Rucksack Coach. 21 portraits we already got sponsored … if you want to sponsor a portrait, you can do so here: Donate please
With only € 3.32 I can give out another portrait package. A framed portrait plus additional photos.
Holistic care. Body, mind and soul. That’s always important to me, also reagrding our cleft friends.
Bullying, staring and being laughed at, the feeling of being different or incomplete have left scars on the souls of those affected as well as with their parents and family members. Surgery is the first of many steps.
Often their self-confidence is quite low. I thought about what else could I do? With a beauty shoot, I wanted to give you all of them a very special day. Each individual should be at the center of positive attention. Getting a professional styling and make-up and having all Camaras on them. Their individual beauty is what I wanted to capture in a portrait. more to: Beauty-Shoot for cleft patients