Wednesday, January 14, 2009

My Whole Stories

Hi! My name is Samuel Ryan Raozen. I am a 6 month old baby boy born in 28 June 2008 in Bandung, Indonesia. I was diagnosed with a rare disease, namely Hepatic Hemangioendothelioma. It is a tumor of blood vessels that makes my liver to swell to almost a size of adult's. The Big Liver makes my heart works so hard that my heart also becoming swollen.

Initially when I was 1 month old, my parents noticed of my big tummy. My cry was weak and I was breathless. I was treated for 2 weeks in my home country where the doctors mistaken my symtoms for viral infection and treated me as they deemed appropriate. They did surgery on my hip where they put a plug to take out some of my blood and put in some new blood. Each time is 5 ml blood only and it took 4 hours to exchange my blood with new blood donated by my uncles. Then my body was swollen due to fluid retention. I was looked chubby while I'm in fact lossing weight !

After doctor realized that it was not viral infection, I was evacuated to National University Hospital, Singapore where I was diagnosed with the blood vessels tumor. Since it is a rare desease in the world, my case become the first experience for my doctor here in handling Hepatic Hemangioendothelioma.

My liver is so big that it fill up much of my tummy space. It pressed my lungs and makes me difficult to breath. It also makes me couldn't drink milk properly, so I need to use feeding tube. I drink limited volume of milk with a machine called feeding pump to make sure the milk goes into my body slowly.

Besides the liver, I also got Hypotyroidsm. Tyroid is a growth hormone. A child surely need it to grow up. Lacking of tyroid is harmful especially for the brain who really need it to develop faster in first year of chilhood. Hypotyroidsm means my body lack of tyroid but it is not because of my tyroid glands being naughty. My glands produce a proper amount of tyroid but the "naughty" tumor take the hormone for himself. It makes my body difficult to grow. Doctor's term is 'I was failure to thrive' while the blood vessels in liver keep growing very fast. You must be agree with me that the tumor is VERY naughty !

So, the good doctors here decided to put some coils into naughty blood vessels in my liver. it will block some of the vessels so my heart wouldn't need to work so hard. They did this procedure called 'Embolisation' three times. When my Oncologist saw the picture of my liver blood vessels, he was very surprised. He said there are 3 arteries go to my liver instead of 1 in normal person. (Well, I know I am special in certain way). Normally the doctor only need 2 or 3 coils in one embolisation. But guess, my liver need so many coils you could not count when you see the picture ! By the way it is all sucessfully done, oh Thank God !

If you see my picture maybe you notice that I use tracheostomy tube. The doctor found my airways pressed by my 'BIG' heart makes me depend on ventilator machine. So, when I become 4 months old doctors open a hole on my neck and place a tube for me to breath. Now I am more happy as I can breath easier. Doctors said hopefully my airway muscle will become stronger when I grow up so I won't need the ventilator and even trachea tube. Well, I certainly pray and believe that I will.

By the way, my health has clinically improved as my body response to chemoteraphy and medication I took. The doctors still want me to continue my medication until I reach 12 or 18 months old since this kind of tumor will regress itself after baby like me reach certain age. Oh, how I want to grow up faster !

Sadly is I've been staying so many months in ICU. Mid November 2008 I was very happy as I can go home to my granduncle's house where we can temporarily stay in this foreign country. But then I need to rushed back to the ICU at 3 December 2008 since I was turned blue 3 times that day. The Oxygen and heartbeat monitor keep alarming because of my condition dropped suddenly. My mommy and auntie did CPR on me while I was gasping for help. I can hear them praying while they keep pressing my chest and blow oxygen through an ambubag " 1...2...3... Jesus help ... 1...2...please...Jesus...3..."
Since that day, I stay in ICU again. Hmmm, I tell you friends, to those who never been in hospital and might think is quite a cool place where every body visit you with the doctors and nurses being so nice taking care of you. I tell you staying 1 night here is really like a year. And if you have to, don't stay too long in hospital like me. It is a nightmare.

Well, after all GOD is keep helping me out. There was also one time in hospital where my ventilator accidently loosened. My heartbeat suddenly dropped to 90 beat/minute, then 50, 20 then stop. Really, it was stop. No more heart beat. You can ask my doctor if you don't believe. Doctors gave me adrenalin shot and did resucitation. And I back my heartbeat again ! It was really scary, but whew ... I feel alive again. Friend, you must really, really - I reapeat - really - with big capital - REALLY grateful that you can breath easily. Your respiratory system is such a Miracoulous Gift from GOD !

Now that my mom and dad facing financial difficulties for paying my hospital bill. When I was born they've asked 2 insurance companies to issue insurance policy, but unfortunately they only accept if a baby already being 2 months old. Then I was sicked before getting 2 months, so no insurance want to cover me now.

I attempt to come up with the costs for medical care, mom and dad have exhausted all their resources up to the point of placing our only house in Indonesia as collateral for the loan ( with an interest rate of 12.5% apr). This is the fastest way of getting cash to pay the hospital than selling the house in this time of global crisis. Wow, what an intelligent way of saying for a baby like me ! You know better about the global crisis than me.

My dad also borrowed a lot of money from our relatives. My parents are willing to give up anything to help me but I know they could not afford anymore.
Mommy said we have paid a total of SGD 100,000 to the hospital and we have at least SGD 80,000 of debt to hospital. It still mounting up as doctors could not know when they can discharge me.

The hospital want us to pay the first SGD 40,000 on 8 months which is very difficult for my parents to meet. And the rest of the bill to be paid as soon as possible.

Now, together with many relatives and friends, mom and dad are applying to many foundations for helps.

Uncle, Untie, Friends and whoever read my story here, I really want to survive through this all. I want to live. And I want to live a fruitful live that I can grow up becoming a big happy boy. I want to become a man who can live a normal life like you and furthermore I want to help people as I am helped by many.

I have dream of helping sick and unfortunate children.

Please pray for me.

A BIG THANK YOU from little Samuel

Samuel is now staying in PICU, ward 46 room 10, National University Hospital, Singapore.

For those you would like to help by donation, you may do by transferring to below accounts. No matter how much is it. You have been a great great help for me and my family.

Richard & Hellen Raozen
Jl. Batununggal Mulia II / 18
Bandung - Indonesia

Richard phone : +62 22 7514465 / +62818614405 (Indonesia)
Hellen phone : +65 98078281 (Singapore)

Donation can be made directly to National University Hospital as follows:

  1. Account Name - National University Hospital
  2. Bank Name - Citibank Singapore
  3. Account No - 0-820551-028
  4. Bank Code - 7214
  5. Branch Code - 001
  6. Branch Name - Centennial Tower
  7. Swift Code - CITISGSG
  8. Bank Address - 3 Temasek Avenue #11-00
  9. Patient Name - Samuel Ryan Raozen
  10. Case No - 1580640351 Z

For Donors who are giving by wire transfers :

  1. Please write Samuel's name and Samuel's case number on the transfer instructions so funds can be allocated to Samuel.
  2. Please fax your transfer form to Ms Anita of NUH Finance Dept at +65-6777-3248. This is so she can tally the amount of donation. For clarification you can call Ms Anita at tel +65-6772-5331 or +65-6772-5332.

For Donors giving in CASH/ CHEQUE/CREDIT CARD, please proceed to NUH Business Centre on the 6th floor of NUH Main Building. Ask for Ms Anita. If she is not around please tell the other staff on duty that you are donating to Samuel Raozen. They are all familiar with his case.


  1. You're in our thoughts
    More than words can show...
    More often than you know...
    We think of you with love...


  2. I wish I knew some special way to make a quick repair... but since I don't, I hope it helps to know how much I care
    Get Well soon Sam !

  3. Sam, so many uncles and aunties read your letters and they all want you to survive and they pray for your recovery. You must, I repeat with capital MUST know that. Trust this will make you feel stronger cause you know so many people really care of you. Get Well Soon.....

  4. Sam, your loving Auntie Grace was sending your story here. I know your Mom and her family since I was little. We went to the same school together. I tell you the same thing as I told your Auntie, this is the time where we unite in prayer and in faith. You came from a strong family, SO YOU MUST BE STRONG! Don't give up, Sam! We do what we can do and God will do the rest. You're in my prayer...

  5. Richard and Hellen, you are in our hearts, prayers and thoughts... please remember that you are not alone... we are here.... Sam, be strong and you are blessed... you are loved... and I am so sure that Helen and Richard are the best parents you can ever had! God has a certain plan for you and your family... just be patient, and trust Him that He knows the best ok...

  6. Sam .. getting well soon. I believe God always giving you kind hearted to make your parents being strong for you not giving up ..

  7. Sam..

    Glad to see u soooo cute.
    You are in my prayer. Also your mom and dad.
    I believe Jesus will make a way for you to live and glorify HIM.
    You are a very SPECIAL Boy.
    Let's see what I can do for you besides my prayer off course.

    Richard & Hellen...
    Keep The Faith

  8. Samuel, get well soon, I will remember you in my prayers..

    Be strong, God is our refuge and hope !!

  9. cici, koko.. jangan khawatir ya..

    ada Jehovah Jireh, our Provider.. =)

    Tuhan akan cukupkan..

    Sam cepet sembuh, iie esther mau liat kamu tumbuh besar..

    btw, ci helen..
    gaji aku gausah di bayar dulu.. lumayan bbrp dollar nambah2 ya...

    Tuhan berkati..

    -esther s. hermawan-

  10. Hi Sam,
    this in auntie lingling.
    we all pray for you every night.
    Praying that you could getting better everyday.
    we really pray that God'a miracle can be shine upon you...
    though it is really hard, God please help us to trust in you every single day. Trust that You always prepare the best thing for all who belive in You. although we couldn't see it now.
    Your elder brother Peter also miss you and your mom, praying that 4 of you could join again together again ...
    God please bless all people who already supported us in their pray and also the fund raising
    God please hear our prayer. Amen

  11. Sam, we'll pray for you and your parents.
    For whatever happened, God is in control, and He
    has a wonderful plan for you in the future.
    "For I know the plans for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
    (Jeremiah 29:11).

  12. Hello Sam, this is auntie Ovie from far far away.We never met before,but i know your Daddy.Just don't worry,Sam, everything's gonna be alright, you are a fighter just like your parents and our God's so kind. You are in my thoughts and prays.

  13. Hi Sam,
    I can;t wait to see you again and glad to see your picture here...

    Long time not see... I hope you now getting better day by day.

    We love you, Sam

    I believe in God
    He will make us worthy by His mercy.
    He works in our way to make us successful by His power for healing Your illness...And blessing your parents too...

    With open our eyes, our ears, and our hearts, so we may see, hear dan feel the blessings and a miracle come from Our God.

    For My Dear Samuel,

    Bless Savior dear
    God Be always near you
    keep us all From evil, harm, and fear....

    In Jesus name we pray."

    With full of love
    Uncle Kinkin

  14. alo Sam, ini om donny, kamu harus bisa kuat yah, om terus berdoa buat kamu dan papa, mama.
    ko richard en cici, saya bisa merasakan perasaan koko dan cici sekarang, karena sebelumnya anak saya dan helen ketika lahir beratnya hanya 1,4kg. harus di masukkan ke dalam inkubator selama 1,5 bulan. setiap melihat anak kami, selalu menitikkan air mata, karena takut...... jangan2 ini terakhir kali kami melihat matthew. perasaan itu yang membuat kami ingin membantu sebisanya ko, mungkin cuma sedikit tapi semoga bisa membantu koko en cici, saya terus berdoa buat samuel, koko en cici, bisa lebih di kuatkan sama Tuhan.
    buat samuel, kamu sudah menyisihkan berjuta2 saingan untuk bisa hidup di dunia ini, maka ini saatnya kamu bisa membuktikan kalo samuel adalah anak yang istimewa yang Tuhan beri buat papa en mama. semangat yah.....

    love you Sam
    Donny,Helen & Matthew

  15. semoga lekas sembuh.......... gbu

  16. Sam, even though i haven't seen you in person nor hold you in my arms...I love you like my own. I wish i could be there for you and your mom, dad and big brother Peter. I wish i could take your burden away so you could be a happy , healthy little boy, the way you should be. you're always in my heart. Get well soon my dear. May God be with you always. love, Aunty Vivi, uncle Mark, koko Kevin & koko Garrett.

  17. Richard & Helen
    we pray that all the best thing from our Lord God will happen to you and your family. All things work together for good to those who love God (Rom 8:28). Keep in faith.
    Baby Sam, we pray that God's healing power is upon you, and you will become a living testimony.

    God Bless
    Hendra L, Nathalia, Jason

  18. In order to transfer money to your acc from abroad, I need the bank's IBAN number. Can you please let me know.


  19. Dear all,
    For the fund transfer to DBS account ( SGD ) the details is as below ( if needed ):
    Swift Address : DBSSSGSG
    CHIPS UID Number : 034675
    Telex Number : RS 24455

    Many many thank you for everyone.May God bless you and your family too as you have been a great blessing to Sam.

  20. hey baby...
    Hari ini sy dapet email (dari milis Aloysius92) ttg Baby Samuel.. Sebetulnya pertama kali saya sdh denger cerita ttg Samuel dari suami (dr. Rodry - as representative NUH di Bandung) tp hari ini baru tau kalau papanya Samuel tnyata my old friend dari Aloy 92.
    We keep praying for you sam.. as I prayed for you from outside of Hasan Sadikin Hospt.-Bandung on the day you transfered to NUH.. Kalo ga salah hari itu hari Minggu, n sebelum ke gereja Rodry mampir u ketemu baby Samuel..
    Salam, doa kami untuk baby samuel, papa & mamanya, juga your big brother..

    ps. kalo boleh bisa minta alamat emailnya? supaya kami bisa forward dukungan2 dan yang lainnya..

  21. hi Sam...
    ini tante lia, tante baru liat Sam melalui foto.sweetheart, You are really a strong and brave boy. Tante lia,om Ferry, Koko Obi and ezra akan tetep doain kesembuhan Sam. Jangan putus harap ya Sam.

    Hellen and richard,
    thank you ya, cerita Sam and terutama bagaimana kalian berdua tetap memelihara iman dan pengharapan cuma kepada Tuhan Yesus, sungguh merupakan kesaksian hidup bahwa Tuhan bekerja dan campur tangan dalam kehidupan kita.

    all of you are always in our pray and thought.

    dari: tante lia

  22. Hi Sam, bring your baby to Tiberias Church bandung (BTC) and pray while the rub olive oil (Minyak Urapan) to the lump of your baby

  23. Dear Helen and Richard,
    My deepest symphaty ya, also thanks you willingness to share baby Sam story to all of us..
    The may the best happen for you and baby Sam..


  24. Hi,

    Unlike others who commented here, I don't know any of Sam's family members.
    But as soon as I read this blog I pray for Sam's recovery and strength to his family.

    Just believe that God's love is revealed exactly in situation like this.

    Get well soon Sam.


    Setya & Family

  25. Dear Litte Samuel,

    I am auntie Mia (ex. HSBC staff). I read your story from a friend in HSBC. May God gives you His strength and blessing upon you...
    My prayer is always be with you.
    Don't give up, little Samuel...
    I love you.

  26. Hi,Sam....
    You really are a special boy in many ways...your strenght and will to fight is unbelievible...May GOD give you His power and you'll recover soon.

    Hi, Helen..
    Udah lama gak ketemu yah..Sorry...baru tau soal Sam ini jg dr Fina..
    You really are amazing parents cause you've never gave up and i know, you will never be...
    My prayer will always be your family..


  27. Dear Sam,

    Hang in there Sam, I'll help to spread the word and pray for you. Don't give up.. Miracle is on the way.

  28. ko richard n ci helen ini yulius ama nia,ko2 n ci2 yang sabar..selama 2 tahun sy jg nemenin mamah yang kena kangker leher mulut rahim, just be strong sy tau terkadang kita down tp yakini bahwa Tuhan beri yang terbaik..aku n anak2 remaja dago dulu cb bantu sebisanya..yang jelas kita terus doain sam di persekutuan keluarga..
    Buat Sam : Walau belum pernah lihat sam langsung, dengan lihat foto km yang berani, penuh harapan..ko2 merasa kecil di hadapan km..terus berjuang ya sam..ko2 pgn ktemu km kl ud pulang ke Indonesia..we all love you samuel..

  29. I believe, for every drop of rain that falls,
    A flower grows . . .

    I believe that somewhere in the darkest night,
    A candle glows . . .

    I believe for everyone who goes astray,
    Someone will come, to show the way,
    I believe, I believe . . .

    I believe, above the storm the smallest prayer,
    Will still be heard . . .

    I believe, that Father in Heaven above,
    Hears every word . . .

    Everytime I hear a newborn baby cry,
    Or touch a leaf, or see the sky,
    Then I know why, I believe!

    I believe, above the storm the smallest prayer,
    Will still be heard . . .

    I believe, that Father in Heaven above,
    Hears every word . . .

    Everytime I hear a newborn baby cry,
    Or touch a leaf, or see the sky,
    Then I know why, I believe!

  30. tante..saya baru dapet kiriman email tentang baby samuel

    very cute..
    saya dan rekan2 saya akan selalu terus berdoa buat baby samuel.

    saya yakin baby sam pasti sembuh. boleh saya minta email nya tante??


  31. tolong kirim k email saya email tante :

    Tuhan memberkati..semoga lekas sembuh buat baby sam.

    saya akan mencoba membantu pengumpulan dana untuk baby sam.


  32. saya percaya kamu bakal jadi pemenang dalam ujian ini, samuel kecil...

    Jangan pernah menyerah, sekalipun pertolongan Tuhan lambat, tapi DIA tidak akan pernah terlambat.

    Jadi, terus berjuang Samuel..

    Tuhan memberkati kamu yah, dan juga kedua orangtuamu yg sangat mengasihi kamu lebih daripada diri mereka sendiri.

  33. Dear Samuel, Aletta has transferred u alittle,but sorry i've forgot to make Samuel notice in the massage.just want 2 support u n ur parents 2 keep stronger than ever...Jesus Luv u..Jangan lelah bharap ma Bapa yah..

  34. Aletta sent it to Richard's BCA,this afternoon..Samuel we lov u, n will pray for u and ur mom & dad f ur recovery..go home to Bandung soon yahhhhhh

  35. Hi, li'll baby Sam, u're look so brave,hope you'll be better soon ...

  36. ko richard n ci helen yg tabah ya..Tuhan punya rencana yg indah u samuel, ko richard n ci helen.hari ini kita boleh menangis tp besok Tuhan yesus akan ganti tangisan kita dgn sukacita yg dasyat.Tuhan yesus dengar tangisan dan ratapan anak2Nya.kl butuh konseling dan doa bisa hub ibu maria di sgpr +6596737590.beliau adalah team doa u org2 yg membutuhkan pertolongan yesus.

  37. Hello, Saya Samuel sepupunya Carolina yang di Singapura, dia sih manggil saya Ruben.
    Setelah baca blognya saya jadi teringat masa kecil saya mungkin seumur Samuel, waktu itu saya juga sakit hampir mati/biru, nafas stengah stengah tidak tau sakit apa,juga padahal ayah saya juga seorang dokter, dan mungkinjuga faktor dana tidak bisa ke sing yg peralatan lebih komplit.
    Cuman satu hal yang pasti dan saya tahunya lewat tulisan di balik piagam baptis darurat saya, tertulis suatu puisi yang melukiskan bahwa saat itu Ortu saya berlutut di hadapan Tuhan dan berserah kepada Tuhan apa yang akan terjadi pada diri saya saat itu. Suatu mukjizat terjadi saya yang nda pernah nangis waktu sakit parah, saat dibaptis katanya saya nangis. Dan setelah saat itu saya berangsur pulih. Dan pendeta yang menulis di akhir puisi menulis " kalau kau besar nanti ingatlah betapa baiknya Tuhan itu".
    Kiranya sharing ini bisa menjadi penguatan bagi Richard & Helen, and baby Samuel.
    Tuhan akan memberi yang terbaik untuk keluarga kalian, GBU.

  38. Saya adalah teman om jimmy sun, saya turut berdoa untuk kesembuhan samuel. semoga diberi kesehatan dan untuk Richard n Hellen. Saya akan ikut meneruskan kabar ini di blog saya. semoga akan banyak para dermawan yang membaca dan terketuk hatinya. Kuatkan hati Kalian

  39. Dear Sam...
    Seneng deh denger operasinya berjalan lancar, dan semoga itu membawa perkembangan yang baik buat kesehatan kamu ya Sam.
    Never give up ya Sam, Ci Hellen and ko Richard too...we all always pray for you.
    Sam, cepet pulang ke Bandung ya...

    With love,
    Alex, Imel, koko Cliff, and cici Gael

  40. Dear Samuel R Raozen
    Get well Soon... God Bless You &
    Richard & Hellen Be strong...
    JESUS CHRIST Bless you all...

  41. Dear Samuel - Ruben. Thank you for sharing with us your story. It is really touch our heart and give us strength.Your healing is God great gift and we are grateful that His gift of healing is provided for anyone who ask and believe.So, Thank you and God bless you Samuel ( Ruben )
    From Hellen

  42. Hi Hellen,
    Udah lama sekali gk denger kabarnya.. but just learn about your stories and challenges Sam having today. Gak tahu mo ngomong apa lagi...
    Keep praying for you guys...

    Siung + Sinta

    Note: Udah coba cari2x diblognya tp gak nemu routing # ya..

  43. Kelupaan... Hellen, pernah denger St.Jude Children Hospital di Memphis, US?
    Mrk bisa terima pasien anak2x utk kasus2x berat.. dan utk qualified patient, mrk bisa cover medical cost berikut living facility buat ortunya... check it out...

    That's it...


  44. Hallo Hellen dan Richard, salam kenal, saya tahu kondisi Samuel dari Siung, sebelum saya baca komentar Siung, saya juga sudah berpendapat bahwa ada fasilitas di Amerika yang bisa membantu apalagi kalau penyakitnya langka, mestinya mereka akan menjadikannya semacam project, jadi tidak perlu bayar.

    Saya dengar berobat di Singapore memang cukup mahal, apalagi kalau mereka sendiri belum familiar dengan penyakit ini, so please consider untuk datang ke US.

    God will give a way when it seems no way.
    Nothing is impossible and nothing is too big for our God.

    My prayer to your family,
    Please take care,

  45. Hi Samuel... saya dr Endah.. ayng melakukan ekokardiografi di RS Hasan Sadikin... waktu Samuel.. berusia 1 bulan... dan menganjurkan ke papa mama samuel...untuk membawa Samuel ke Singapore... karena menurut saya pada saat itu.... problem Samuel bukan di jantung... tapi di Hati dan... saya juga sempat email email an dengan Prof Quek tentang kondisi Samuel. Senang melihat Samuel udah gede... tapi sedih membaca kisah Samuel yang ap harus keluar masuk RS... dan memerlukan biaya besar... doa saya untuk Samuel dan papa mama... untuk tetap tidak menyerah... salam dari Bandung

  46. i found your site without looking - my son has a similar story to yours.

    we are very lucky - we have the National Health Service in the UK. I would like to send you some money to help your little boy because I know how difficult your time must be.

    with love

    theo's Mummy

  47. We saw the blogspot.Looking at how Theo is when he s playing the piano at music theraphy touch our heart.You re facing similar condition, yet you still helping us.Theo and Sam are brave and tough boys.By the power of God's word :He has bear our sickness and our weakness at the cross (Matthew 8 ) we truly believe His healing power keep working on them.
    Our prayers are with you

    Thank you and God bless you,
    Sam's mommy