How You Help
These are some families that could really use our help!! They have been through so much! These children are true examples of what love and strength is all about. Some of the families need help with medical expenses and others need help with follow up care. Please read their stories. These children are true survivors and their families are so strong. Every time I read these stories it touches my heart so much because I can relate to what they have experienced. They are always in our prayers, as well as, the other survivors of KD and the families that have lost a love one because of this disease.
Sofia’s Kawasaki Disease Story:
Sofia is a fun loving 5 year old who loves everyone! When she was just 26 months old she became very ill. It seemed as though she had the flu. She started running a fever, runny nose common cold symptoms along with throwing up. We had several trips to the ER to find out she had a viral infection and it needed to run its course.
I knew as her mother it was more than a Viral infection. After the fourth day of her becoming ill she became lethargic. We were still being told that the infection needed to run it’s course and it could take up to 14 days to leave her body. By this time new symptoms were starting to appear. She developed a rash in the diaper area, her lips were very cracked and dry. Her tongue as I remember describing it reminded me of sandpaper. Her eyes were blood shot. Her lymph nodes under her arms were huge, her fever remained 104.5. Her little feet seemed a bit puffy and red. I did point some of the new symptoms out and it was still told to me she had a viral infection. She finally was seen by her pediatrician and I begged him to send her to the Hospital for IV fluid as I thought she was dehydrated he finally agreed to send her and there she was finally diagnosed w/ Kawasaki Disease and transported to Akron Children’s Hospital.
Dior’s Kawasaki Disease Story:
Dior started showing symptoms of what we NOW know was Kawasaki Disease in late November 2008. He started having cold/sinus infection like symptoms & leg pain to the point that he couldn’t walk over and over again all the while his lips had begun to look like he always was wearing “bright red” lipstick. Figuring it was just my imagination, I never brought it to anyone’s attention though. So the first time the fever’s began & continued to be persistent I took Dior to his pediatrician, he was diagnosed w/a sinus infection. The fevers would continue to last for about two weeks & finally would break briefly (maybe for only about two days). Now he had finished all of his antibiotic and was fever free for a couple of days and feeling better, but still had the red lips. He started complaining of a headache, leg pain and sore throat then the fever to follow and this time he started looking flushed and his cheeks began to look red. Back we went to his pediatrician & we were told this time it was Strep Throat. Another round of antibiotics and doubling up with tylenol and motrin for the fever which had reached temperatures of over 104 degrees at night! Which now we were well into December 2008. After the ten day course of antibiotics for “strep” and the fever had finally come down for maybe about a week & a half. We were celebrating New Year’s Eve with my family at my sister’s home when Dior began vomiting spiked a fever & started complaining of his legs hurting once again. My baby sister, who was studying to be a Pediatric Nurse at the time, demanded that he be taken to the ER because this was going on too long. Back to his pediatrician he went with yet another diagnosis of a sinus infection. When the fevers didn’t break after three days this time we rushed him to AI duPont Hospital for Children on( or about) January 6, 2009. They examined him and agreed with his peditrician saying that what was going on was infact a sinus infection and to bring him back if the fever had not broke w/in the next 3 days. We went home got him comfortable and it was that night that I first heard the words KAWASAKI not being used to refer to the motorcycle. The news reported that John Travolta had lost his son from complications of a seziure and that Jed Travolta had been diagnosed w/KD at the age of two. Listening to the news I thought that was so horrible to have had happen to a celebrity that I was really fond of. Little did I know I would be introduced to the same horrid disease personally w/in the same week. Taking my sister’s advice, three days later Dior was rushed back to AI duPont Hospital for Children and I DEMANDED that they do all kinds of blood workups in order to find out what was wrong w/my then 5 1/2 child. We waited for 9 hours & our worlds were turned upside down when we were told that our son had Kawasaki Disease on January 9, 2009. I was given tons of information about the disease, several doctors were in and out of our room because my son DID NOT fit the text book criteria of a KD child. He was almost six, african american & male…..at that time all VERY RARE! He was treated w/IVIG & high doses of aspirin.The fever broke finally and they thought he had responded well to the treatment. The last thing that they did was the ECHO & EKG, on the day of his discharge. Their thinking was that he would not have had any complications but it had to be checked & the worse information that we could have ever imagined was given to us….”unfortunately we did not diagnose him in enough time to prevent damage to the blood vessels and arteries of his heart.”
The Doctors were stunned also w/the findings more so because of his age. So my baby was discharged only to be readmitted some 24hrs later w/a terrible headache & the spiking fever was back. We had to stay for three more days until the fever was gone. In the meantime I had to miss several days of work & began to hear the grumbling around the office.
Dior had been feeling a little better but not 100% to me. Started complaining stomach cramping here and there and began to look increasingly worse to me. I started noticing that “red look” again in his face and lips then came the fever. February 2009, some 28 days after his original discharge, he was readmitted w/a recurrence of Kawasaki Disease!! He was treated again w/IVIG but this time he had a bad reaction to it & they had to stop the infusion briefly before restarting it. They thought once again that he had responded well to the infusion and was discharged a day before his 6th Birthday. In the meantime, I had to continue to miss several days from work and I ended up loosing my job by March 09 due to my absences because of my child being ill.
To this day my “Baby Boy” has had a cascade of illness since being diagnosed w/KD & consequently Coronary Artery disease. By March it was recognized that he was IVIG resistant and needed to be put on steroids for 15 days, by March 2009 he started complaining of severe stomach pain & eventually was diagnosed as having Crohn’s Disease, April 2009 they found an aneurysm in his coronary arteries, January 2010 diagnosed w/restrictive lung disease, and in June 2011 diagnosed w/ Immune issues. He has been in and out of the hospital and sick off and on since 09 all the while struggling to continue to keep up w/his peers in school.
Dior is presently & always has been our lil fighter whom his dad has nicknamed “ROK”!!
AWARENESS is the key!!!!! If one can recognize the signs of this disease then the chances of having cases like Dior’s will decrease. We have to be our child’s voice.
Reigns Kawasaki Disease Story:
The family we are helping! Please read their story. We are trying to raise enough money for Reign to get a second echocardiogram.
Reigns story:
SEPTEMBER 2010
REIGN’S KAWASAKI JOURNEY
( A TESTIMONY OF GOD’S GOODNESS AND FAITHFULNESS )
AND THE TRUTHFULNESS OF HIS WORD IN OUR LIFE !!!)
It was Sept. 9,2010 when Reign my 3 year old got a slight fever, she was so hyper, just playing around though I know she has fever.And bought her paracetamol but I was’nt able to give her because she’s in very good condition.
The next day came Sept. 10, the fever continued and I gave her paracetamol.As the day ends,the fever never stops despite of giving her paracetamol.That night,she started complaining of stomach pain,headache.For the whole night,she was restless of pain and fever.
Saturday came (DAY 2 ) – Her situation worsen, her lips started to chap/crack. Her hands and feet started to swell, and rashes also started to come out in her body.
Again, for the whole night of Saturday (September 11) , she was again restless because of the worsen situation.As a mother, I didn’t know how to ease her pain,despite of giving her medication, there’s no relief.
So Sunday (September 12 – DAY 3) We rushed her to the hospital with my cousin Atah and Ditche(my older sister), because we thought that it might be dengue,but it wasn’t. The doctor even said it was measles but was not, so we went home.
Monday came (September 13- DAY 4) – I brought her to Dra. Abello and Dra. Cruz, our RHU ( rural health center) doctors. Cbc and Ua were done. She was given antibiotic, but the situation didn’t changed. At night , my heart was really in pain too because how I wish I could take all the pain she’s suffering from. I just prayed and prayed.
Tuesday (Sept.14 (DAY 5) – I texted Dra. Cruz and told her there’s no happening inspite of medication.And she replied and explained to me how the antibiotic works. So we just stayed home the whole day.
Wednesday of September 15 ( DAY 6 ) I called my bestfriend May , I told her about the situation why is it that the symptoms or the situation gets worst and worst. She told me to bring Reign to Dra. Betina Santos,(an infectious disease specialist) Laboratories were done again, finally she diagnosed Reign of having the KAWASAKI DISEASE.
September 16 Thursday (DAY 7) – I still brought at RHU to check again cbc and the result went higher. I was so pressured, I need to bring her to Manila since there’s no medication available here in our province and the cost of the medicine is so high. I need to find help.I started texting and emailing friends for financial support. I shouted everyone at facebook. I went to our Mayor to ask for ambulance, the time is running out because we’re on day 7, medication should be given only until day 10….That’s how pressuring the situation is…..
September 17 Friday ( DAY 8) We’re still in Bataan. I only have more or less P15,000 given initially by family and friends on my hand (almost $350) the fact that I needed a P100,000 (over $2,000) for my child. “Where am I going to get that?”I asked myself.I never stopped praying, from the start I know GOD is with us. We packed our things. With Ate Jovy and her cousin (they are social workers in our place and Kuya Obet (ambulance’s driver).They are great in helping.That Friday at 1pm, the journey has just started ……..
Looking at my child with all the pain, with hope and faith in our hearts.We went to Manila.
First stop, National Children’s Hospital after falling in in a very long line, we were started at E.R (emergency room). They know it was Kawasaki. But there’s no room available,i.c.u available.So we went to another hospital,Jose Reyes Medical Center.Again, no cardio around, no room available, no i.c.u ..and the most that frightened me the Kawasaki patient who was treated there, didn’t survived.We went again to another hospital, PGH(Phil. Gen. Hospital).And we were disappointed bec the line of patients is far far than we imagine!!! The hospitals that we’ve gone through are all government hospitals bec we can’t afford the private.But after PGH we decided to try the private. We went to Infant JESUS Hospital in Sampaloc, Manila. It was there where my oldest son was confined when he was 2mos old that’s why I know how expensive but the doctos there are all specialists.
Accepted at E.R at once, we were asked if we know that the medicine will be bought in cash. I said Yes! But the price I didn’t expect when the doctor told me that the medicine alone will cost P132,000 (almost $2,000).I cried !!! I was moved by what my sister said, “ Kalina pa tayo palipat-lipat ng hospital pero di tayo nanalangin!” I( We’re going to one hospital to another but we never prayed.)I cried louder ! We sat on a bench inside the hospital corridor and we prayed for wisdom and guidance aloud. I didn’t mind the people around. I prayed harder and louder. After we prayed, the E.R doctor approached us, she asked me if my daughter will be admitted, I said I don’t have that amount.The doctor said, “: Why don’t you bring her to PCMC (Phil. Children Medical Center).It’s a semi-private hospital, the medicine can or maybe cheaper and also with facilities.The doctors are all specialist,they were my collegues.I felt hope in my heart. As we were riding again on the ambulance.I looked at my daughter.She no longer complains, with the high temperature still at 40C,with the swollen feet and hands,chapped bursting lips sometimes bleeding and rashes,I cried silently and prayed again because she’s restless although she’s in aspirin.
Arriving at PCMC at 1 o’clock a.m, (imagine we left Bataan at 2pm that day) we rushed her at E.R.She was again accepted and checked, and the same question was asked, and for me a one million dollar question, “ Are you aware Ma’am that the medicine wil be bought in cash?” .. yes ! But it was true, it was cheaper, P128,000. My heart sunked again..But I never give up !!! WE never give up , my sister ( I call her Ditche,Ate Jovy and her cousin and Kuya Obet (the driver of the ambulance who happens to be my churchmate). WE never give up for we know that GOD is with us and GOD will make a way!
Saturday, we’re already at DAY 9. We’re still at E.R, we stayed at E.R for more than 24 hrs, until the time we completed the money bec we will be allowed only to leave E.R if we only have the amount to buy the medicine.
That Saturday morning my older brother came( I call him Diko) with my sister Ate Cristy (older than my diko) with my niece Jenielyn. My niece handed me out the amount of P46,000, P6,000 came from her mom, my Ate Cristy, P40,000 is the only amount she can withdraw from the atm since it’s Sat., no bank available ..” She said to me, “ Pacencia k n dito Tita eto lang ang nwithdraw ko, eto lang maibibigay ko pero utang yan Tita ha ..”(This the only amount I can give you, I hope this would help but you owe me this amount).And I was thankful !! ( to all of them.
My Ditche who was with me very early that morning went back home in Bataan to ask more help.My Diko who was with me promised to give P20,000, his was money is in our place.
Still at DAY 9 as the hours pass by, still at E.R, don’t know if we can get out. With all the pressure, with the situation around, three babies has just passed away on the other bed.And my child was sharing her bed with another baby who was suffering from convulsion.
Suddenly my phone rang, a friend called, it was J.R de Asis and offered help.I thank GOD again. After that call, my daughter was asleep, I asked Sarah Termil, the mother of Reign’s bedmate to look for Reign since I’m hungry, I went outside to buy food since I know that my sister is on her way back to the hospital.
With the problem now sinking in my heart and mind, I sat on a bench at the hospital’s park.It was then my sister came up crying,her eyes were almost swollen. I smiled at her and say, “ Oh baket ka umiiiyak?” ( Why are you crying?)She said,” Ano ka ba, hindi ka ba nabibigatan sa problema, iniisip ko si Reign. ( Are you not burden by the problem, I’m thinking of Reign!) I answered back, I said, “ Ditche alam mo naman na ako ang tipo ng tao na hindi basta iiyak o iyak lang ng iyak, sa DIYOS lang ako umiiyak kapag nanalangin. ( Sister, you know that I’m not the type of person who will just cry or will keep on crying all the time.I will just cry on to GOD whenever I pray.HE’s the only answer to this problem. After a while,she left and went back to Reign and told me to have my dinner.She left me still sitting on the bench, looking at the sky. I began to cry. I began praying. I talked to GOD but I never questioned HIM for I know HE will make a way.After praying, my phone rang. It was Heide ( a long time friend, one my bestfriends) asking how was Reign, telling me to never give up.They’re doing everything. I can’t say anything but “thank you”! We put down the phone. It rang again, May and Raymond Santos (couple),they are again my bestfriends who’d been very supportive from Day 1 and everytime.Raymond and I had a long talk while I’m making my way to the canteen and while I’m having my dinner.My bestfriend May (his wife) was on the computer, checking on my fb account ( I gave them my password) It was thru fb we’re communicating w/ other friends who wanted to help.
After that talk, I felt relief. I remembered what they said,” Don’t give up,we’re just here doing eveything.Don’t lose hope!! Only thank you again, is all I can say for I know in my heart GOD cares for Reign.HE will give Reign HIS mercy and compassion.
When I went back at e.r., Ditche handed me out the P20k given by Diko and went outside bec only one companion is allowed.She will just sleep at the bench outside.I counted the money.I already have P75k !! Wow, I only need now P53k more.I said to myself, “ Where am I going to get the remaining amount.?”
Then a doctor approached me and asked me, “ Mommy kumpleto n po ba pera nyo?”( Mommy is your money complete?) I said No but my family and friends are doing everything, by faith this will be completed in time. The doctor said , “ I’ll see what I can do?
Sunday came – DAY 10 – Last day of battle ! last day of hope! Time is running out! Very early of that day,almost 2 or 3am,we were able to get out of E.R. we are headed to a room, a charity ward room.
Again at around 4am,my sister went back to Bataan again to get the money promised by friends,family. Diko my brother gave again 20,000 but I should give him back the amount when I got friends help because it’s their capital money for their business.
At around 1pm that day my husband Marlon arrived at the hospital, next to my sister. My husband attended our worship service that Sunday because the church will make a special offering for Reign. And I texted Pastor Ding Carlos early that morning to ask for prayers of the whole church and plead before brethren to give to the most generous way.
Finally, my sister arrived. We counted the money. It was almost or more than 110,000. PERFECT! More than what we asked from GOD! Why the amount of the medicine from 128,000 was moved down to 108,000 because of the doctor who told me “ I’ll see what I can do!” the sad part I didn’t get her name, because they are many of them shifting schedule in the E.R. She was used by GOD!
After counting the money, I gave my sister all the money in my pocket and she rushed to the pharmacy. The medicines were resesrved already for Reign. When she came back with the Immunoglobulin in her hands ( that’s the name of the medicine if I remember it right) I praise GOD! GOD is good, all the time! HE is true to all of HIS promises, HE is our great provider! GOD never fail who trust in HIM! HE is in perfect time, HE was never late! HE is faithful, more than faithful!
As the nurses were preparing for the medicines. We were talking!, suddenly worries and fears came up on my mind. Because I remember Dra.Santos(her doctor in Bataan) that when the medicine is to be given,she should be in the ICU pedia set up, a cardio must be around, and most, the first 15-30mins. of the first dose is very critical because there is a possibility that her body would not accept the medicine and complications might rise up. For a mother like me, I can’t help myself from worrying because I want my daughter to live and be free from all the pain and suffering.
Again, I was rebuked by my sister ,” ano ka ba! Ayan na ang pera, binigay na ng Diyos, ngayon ka pa ba kakabahan? Magtiwala ka lng sa DIYOS!” (there’s the complete money completed by GOD,now you’re gonna worry? Just trust GOD!)
I felt ashamed. I rebuked myself. So as the nurses came in with the first dose ready to be given. We prayed again with the nurses. We thanked GOD, trusted HIM and give HIM all the glory!
So after the 1st dose given, my sister will go back home now in Bataan, to take care of her own son who has high fever, who’s also sick during the time she’s helping me out. With the money left in my hand I gave her money to be used for the check-up and medicines and her fare. It’s my husband’s turn now to be on my side. I feel the joy in my heart for GOD’s goodness and faithfulness.
Now, I remember Sarah, the mother of Reign’s bedmate who’s suffering from convulsion. In one of our talks at E.R.. knowing how hard her situation is,like mine, or maybe harder, I told her to help me pray, for GOD to meet my needs and I will help her in any amount I can. And I fulfilled my promise, I went back at E.R. because she’s still there. A did that because I want her to see my GOD who provided my needs, the same way I know GOD will do to her.
I met her at corridor near the pharmacy,she was thinking of going to me because she badly needed money for the medicine. See how GOD works! And I gave her the P800, that maybe small but that’s the most I can give w/o thinking where I can get the money for the hospital bill, but I’m very happy to help. That’s nothing compared to the love and support by GOD,family and friends gave me.
At Monday (DAY 11). The journey has ended, we win the battle through GOD’s grace and mercy. TRUE! GOD’s children are victorious. As what is written in HIS words, GOD never fails those who trust HIM!
We stayed in the hospital 3 more days and GOD continued to be faithful! To GOD be the glory!
And I dedicate this story, first and foremost to GOD, it was a year over and I remember all HIS goodness and faithfulness in our life during that biggest trial.
To my family esp to my Mother whom I know from the first day Reign got sick , she was been very supportive and loving, for who am I and how am I is how she raised me to be. I love her so much.I know all the pain and suffering I’ve been through, she felt the double pain.And I know she never stop praying esp when we were in Manila.All the support that she can give, she gave all whole heartedy, more than I asked for. I love you Inay !!
To my siblings esp to Ditche who was with on the hospital, Diko, Ate Cristy and Arnold. To Kuya Danny and Sangko in Japan , I know they got worried..Thank you.I love you all. To all of my nieces and nephew, continued to be prayerful and supportive of the situation, thank you!!
To my husband Marlon and my kids Goven and Karl for behaving because during that time when their Daddy was with me already they were took care by my family.
To my friends esp to May and Raymond Santos, Heidee and Arnel Mendiola. To all of my friends in U.S who sent money, May Baluyot, Marivic Santos and Marilyn Carreon-Tanala. To all of my other friends, any way or another helped me and all of my neighbors.Thank you !! T
To my home church esp to our resident pastor, Ptr. Ding Carlos. And to all of my churchmates esp to all the prayer warriors.. thank you all. Forgive me for not mentioning all your names for I fear that I might forgot one…
To all who will read this story, this for me is not just a story of surviving from the disease. This is a story of having a loving and supportive family,how in times of need, they will not hesitate to give all the love and support that they can. Friends who never give up in helping. Church binded by the love of GOD to be a channel of help and blessing with warriors who pray earnestly to GOD.
And GOD who is true to HIS promises, to HIS Words. Faithful ! HE is forever our provider and healer. The GOD whom we know never change and will never change !!
And most of all, WITH GOD NOTHING IS IMPOSSIBLE !!
