Hello, I'm Leon, born on April 11 this year via cesarian section. I had neonatal pneumonia and stayed at NICU for 7 days. While the doctors are checking my x-ray, they've found out that I have dextrocardia with situs inversus totalis. It means that my heart is on the right side and my organs are in mirror image. So mama and papa thought that maybe that's just it.
I was almost a month old when my pediatrician noticed that I'm still jaundiced. My poop color turned pale yellow to white when I turned 2 months old. They suspected that I have Biliary Atresia. After all the lab tests and biopsy, only the cholangiography procedure proved I have it. I just had my Kasai Operation when I'm almost 3 months old. Pedia Surgeon told us that I only have a small chance for a successful operation.
We sincerely ask for your help and we don't have enough money to support the liver transplant operation. It costs P4-5 million philippine pesos (approximately $80,000+) in the Philippines or in Taiwan which have high success rates of operation. Though we are also hoping for a miracle to happen and praying to God that everything will turn out fine, financially, you can help me extend my life as well. Our savings is almost exhausted from my Kasai Procedure and from all the medical and hospital bills. We sell t-shirts, ballpens, and held a raffle-for-a-cause recently and my Dada works hard to earn money while Mama does online selling while taking care of me. Mama and Dada wanted to see me grow up and have a normal life. I'm their only child and my parents waited for me for over 6 years after two miscarriages.
Our last update was about my son's health was August 2018. So far, Leon is still doing well and we somehow follow his doctors' monthly check up and vaccines. He just had a few colds, coughs and fever this past few months and nothing serious about it, that lasts for 3-5 days. Thank God. He just had a mild case of cholangitis last November and did not require confinement. Leon is still in his prophylactic antibiotic just for prevention of cholangitis.
Leon still have splenomegaly due to his condition and we're hoping that his liver will work for years to come.
We are saddened by the news that Leon's other groupmates from the support groups that we joined succumbed from this illness because of being immune compromised and having complications. Others have failing Kasai ,means that their kasai procedure is not working anymore just after a few years. Others died after transplant because of complications too.
I just started working online a few months ago to provide for Leon's medical maintenance and to help his dad for the expenses at home. Still, we try to save up for his possible liver transplant and slowly we are trying to reach our target goal. It seems impossible but we know that God will provide kindhearted people who will help us reach our goal.
If you happen to see campaigns like this, do try to help sick kids. Know if the account is legit, because we heard news from others that there are bad people out there trying to make money out of sick kids by grabbing their pictures and putting fake details. We talked about it in our support groups.
I am a member of these support groups and if you have time please do check them out.
Hi, it's been a while since the last time I've posted for an update about our son, Leon. Last May, he was confined because of recurrent cholangitis and got home after a week of IV antibiotics. God is good because after that confinement, he did not have cholangitis the following months until now and gained weight as well. He is updated with his vaccines. He had flu a month ago but he got well after a few days maybe because the flu vaccine helped a bit.
We were very observant especially with his poops because we're afraid that he might poo or vomit blood anytime and it's because of his portal hypertension. He only takes his maintenance medicine for that. We've asked his pedia hepatologist what to do about it but she only suggested that she'll find a way when the time comes if ever he poop or vomit blood. His platelets are also low and his spleen is getting larger too.
Aside from his health, the good news is he can now walk and he's as playful just like some normal healthy kids out there. He's talkative too.
We are still preparing him and his living donor which is his Dad. Still, we ask everyone to pray for him and his Dad to be well before the doctor suggest that he needs liver transplant soon.
Leon was confined once again for more than a week after having fever that goes up and down for a week. He was treated for cholangitis and suspected of having viral infection. We just got home today. He lost weight again and been between 8-9kg since December 2017. I just hope that he gain weight after his confinement.
Leon's monthly lab today is good according to his pedia gastro. Then from cefixime, he shifts to cefuroxime as his prophylactic antibiotic. I also asked her about the spider veins in his stomach for which she answered that it is portal hypertension, just being well maintained through the help of atenolol, (another medicine that Leon takes since his kasai procedure).
Still, I ask for prayers for Leon to get well until the BIG DAY comes.
We thank you all who include our son in their prayers and thoughts.
Hi, we're back again here at PGH. It is such a roller coaster ride having a baby with biliary atresia. Leon had fever and been here at PGH more than a week now. His first 2 I.V. antibiotics did not resolve his recurring fever. This 3rd strong antibiotic cleared his fever for 2 days now and we're praying that it won't come back. Doctors are treating it as cholangitis. I can't really make Leon take antibiotics orally especially if the powderized form because of its super bitter taste. It makes him puke a lot. He is getting thinner on each hospitalizations. We're still hoping that his Kasai won't fail as we are still raising funds for his possible liver transplant. We really wanted to go home.
Please share his page and please help us reach our goal. Thanks and God bless us all.
It's been a while since I've updated Leon's page and for 2 months after his bouts of cholangitis, we stayed at home but currently we're back at the hospital for having pneumonia and stomach flu. We don't really know where Leon got it but me and his dad also got stomach flu from him. So the three of us were sick but we still take care of Leon and do whatever we can. Please pray for us and I still believe in God that we will get through this.
It's been 4 days since we're out of the hospital now. We decided to go to his pedia to have rotavirus and pneumococcal vaccines. 2nd dose for both and he's turning 7 months next week. He's below average in weight but his height and head circumference are not in the good range due to being sick lately. We're thanking God above for giving us good people who are helping us in these situations.
We're here at the Philippine General Hospital once again because Leon had another bout of cholangitis and found out through ultrasound that his ducts are inflamed and infected. He was given Meropenem for that's one of the antibiotics he respond well. We positively look forward that this will treat him well and won't need any surgery.
To all who continuously help us, we thank you all.
For all the updates about our son, Leon, click the link below.
Leon is in good shape and doesn't have any fever or been sick for almost 2 weeks after his last hospitalization this August. We thank God that he gave Leon strength and we are also thanking all people who prayed and donated for our son.
As of now, we still observe his Kasai if it is still working. We inspect his poop everyday because he have an on and off pale stools. He have check ups every 2 weeks so we really need to know what causes that on his upcoming check up. Please continuously pray for Leon.
Still at the Philippine General Hospital. Leon is finishing his 10 days antibiotic. We agreed to stay for a few more days when he's done with his antibiotics just to observe if his fever will come back. We're waiting for his 2nd blood culture as well. Hoping and praying that all is good.
Hi, good day everyone!Our last update was about my son's health was August 2018. So far, Leon is still doing well and we somehow follow his doctors' monthly check up and vaccines. He just had a few colds, coughs and fever this past few months and not…
Hi, it's been a while since the last time I've posted for an update about our son, Leon. Last May, he was confined because of recurrent cholangitis and got home after a week of IV antibiotics. God is good because after that confinement, he did not ha…