Athlete grew up with cleft, had to overcome ridicule and is now running marathon for cleft patients

¨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.

In order to support his family, he works in addition to his 40 hour job for NCFP as a pedicab driver in the nights and on the weekends. He also makes time to train for his special cause:
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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.

 

 

 

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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

 

Beauty-Shoot for cleft patients for more self confidence and more

Beauty shoot for more self-confidence(idea © Rucksack Coach   –  Photo © AnnKathrin Lange)

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.

Donations to Rucksack Coach are tax deductible.

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

Idea © Rucksack Coach
Photo © Ann-Kathrin Lange

Portrait No 23: We’re a poor family but we’re happy together.

Portraits-14Hi! Hello my name is Reena Marie Orillosa Garces. We are a poor family but we are happy together. When someone has a problem we solve it together. My ambition is to become a photographer like Ate Melly and Ate Ann-Kathrin. They are my friends in Germany, how I wish to become a photographer someday like the two of my best friends.
But there´s a problem, there´s a difficult problem like my Ate Estela has too. We can´t go to school because we have no money. Lord help me and my Ate Estela to find someone who sponsors our school supplies because we like to go to school so that we finish our study. So we can help our parents to let our little brothers study and our little sister Niña Grace and to help to find food for us.
That´s all. Thank you. Reena Marie Orillosa Garcs Maquiling, 11 years old.
From Binting, Calape, Bohol, Philippines.
Idea © Rucksack Coach – Foto © Ann-Kathrin Lange.

Cleft operation – the result brought tears into our eyes.

Leemcer Collage 1Since 5 months my three year old daughter and I, accompany as Rucksack Coach, the young family on their way. Leemcer Zeus was initially not strong enough for surgery. After 4 weeks waiting in Manila, we cheered together for the next X-ray examination. The result brought tears into our eyes. Leemcer’s pneumonia was not yet completely healed. An operation was not possible. The next X-ray examination could take place in not earlier than 4 weeks. The young family decided to return to Bohol and wait there. Would they come back? Would her flight again be sponsored by NCFP? I promised not to stop support until Leemcer Zeus receives his first operation.

On April 30, I brought Leemcer and parents again to Manila. NCFP sponsored the flight. Leemcer was operated by the specialists of NCFP on his cleft lip.

The healing is going very well  and if all goes well Leemcer Zeus will get his cleft palate surgery in 3 to 6 month.

Idea © Rucksack Coach – Photo © Ann-Kathrin Lange.

Portrait No 20: Her positive attitude opened new doors.

June Marie is the mom of cleft child Leemcer Zeus (8 months old).

Together with husband Resmeel she lovingly cares for son Leemcer. Leemcers cleft lip scars have not yet healed when the young family received negative news from Bohol. They were driven out of their home and have to start from scratch. Continue reading

Portrait No 18: Allan

Allan is 24 years old. In march 2015 he got operated on his cleft palate on the same day as his two brothers Gerald and Benji. The operation was performed by the specialist of NCFP.

Allan was the oldest patient who was brought by Rucksack Coach from Bohol to Manila.

 

Idea © Rucksack Coach – Foto © Ann-Kathrin Lange.

Starting from the scratch with doormats. Never give up. And how you can support.

For 5 month now, my 3 year old daughter and me, accompany cleft patients on their long way to recovery. I was looking for them, driving to their homes to the different barangays and had gunmen following us. I brought them to different check-ups and went with them on a over 30hour journey to Manila. We rode together tricycle, multicap and jeepnis, taxi, pedicap, ferry and plane. I had support on the way and was suddenly left alone. But I had promised not to stop until all 10 patients received their first operation and they know how to get the follow up operations. (All operationa and compleat clft treatment done by NCFP). Now 5 month later all 10 patients have received their operation. One major step is done. Thank you to everyone to helped along the way. Also to the ones who had not the endurance to finish. I did learn from all of them.

Along the way I got to know patients and families very well.  We shared joy and tears, laughter and sorrows. The cleft patients and families became our friends and finally our family.

Continue reading

Portrait No 17: Mama of 3 cleft children shares her story

My name is Jocelyn Roluna N., my husband is Wilfredo Selem N.. We have 10 children: Krystel 21, Joeffrey 19, Wendelyn 18, Jovanie 18, Jovelyn 17, Welly 15, Gerald 13, Jerome 12, Jonathan 11 and Jonas 10. Our oldest daughter graduated highschool. She is going to apply for work. She has no work experience so far, but I want her to work so she can help her brothers and sisters.

We don’t have enough money for everydays life. We live on a small island and sell the fish my husband and our sons catch. But mostly it is not enough for all of us. I have a sideline, I am a manicurist, sometimes I have service, but sometime I cannot serve because my hand cannot work for a long time. Sometimes my body and my muscles are in pain. Sometimes my in-laws have pitty on us and help but it happens only sometimes.

Most of the time we don’t have enough money. We try to save money so our kids can go to school, but it is just not enough.

This is my short story, thank you for listening and reading my story. Good day. Thank you very much. Jocelyn N.

 

 

Idea © Rucksack Coach  –   Photo © AnnKathrin Lange.

 

Cleft patients from 5 month to 36 years – Philippines

 

 

 

 

 

 

 

Portrait No 15: Welly Natividad

Welly Natividad, nickname Jhimboy is 15 years old and lives with his parents and his 9 siblings on Pangangan Island in the Philippines.
The family income is very low, so that Welly supporst his father when fishing to feed the family.

Welly was operated as a little boy on his cleft lip, but it was only in April 2015 that he received his follow-up operation for his cleftpalate. He was brought to the 1,000km distant capital Manila by Rucksack Coach and operated from NCFP.

Idea © Rucksack Coach –  Photo © AnnKathrin Lange.

 

Portrait No 12: What happens after cleft surgery? Did we change a live?