Monday, June 15, 2009

How do we cope with difficult times?

June 15

...remarks of regret

Just came from a whole day follow up to some popular people from different offices of the government. Hmmmm.....well...kinda sad because all I got was a lot of remarks of regret. No funds for such kind of operation, not connected with the hospital, budget allocations not intended for biliary atresia babies. But I am indeed truly not giving up with this battle. I know that there are a lot of people out there who are compassionate, understanding and kind. I just need to find them. Experiencing a lot of difficult times these days but that reality makes me even stronger to face all the trials that may come our way and hinder our drive to succeed.

Thanks to Sir Darwin for the persuasion and support and to all those friends and members of the family who keep on believing that NOTHING IS TRULY IMPOSSIBLE IN THIS WORLD....WITH THE HELP OF OUR LORD ALMIGHTY!

June 14

...how do we cope with this difficulty?

Just having difficult times raising funds for JC's liver transplant because I recently received a lot of regret remarks from the offices of famous people from the government...

-they can't help because they lack funds

-they can't help because the operation is to be done outside our country

-they can't help because the amount that we need is so huge

-etc...etc..

But this make our family even more hopeful and stronger because we know that there are still people out there...the compassionate ones who can still help us in getting the amount needed for the transplant cost. We just have to keep the faith in God. We just have to have real faith and do not stop looking for charitable people. God will lead the way!

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MY YOUNGEST SON NEEDS YOUR HELP...PLEASE

Good day friends...My youngest son Jan Ciryl Tiburcio has a very rare liver ailment called "biliary atresia"...he needs liver transplant in order to live. It is a condition where the liver does not have enough bile ducts and as a result the bile builds up within and destroying his liver. You may visit the website of Lift-Babies Foundation Inc-Philippines for more information about the disease. Pediatric liver transplants can be done at the Chang Gung Memorial Hospital in Kaohsiung Taiwan, at the Glen Eagles Hospital in Singapore, or at the Queen Mary Hospital in HongKong at a cost ranging from 4 to 7 million pesos. We can not afford such huge amounts that is why we appeal for your compassion. Please help us raise money for the transplant. Any amount you can contribute will help ensure my son's survival. I am begging all of you.

Eloisa
Mother of JC

Biliary Atresia (BA)

(excerpts from American Liver Foundation website)

Explore this section to learn more about biliary atresia, including a description of the disease and how it's diagnosed.

What is biliary atresia?

Biliary atresia is a disease of the bile ducts that affects only infants. Bile is a digestive liquid that is made in the liver. It travels through the bile ducts to the small intestine, where it helps digest fats.

In biliary atresia, the bile ducts become inflamed and blocked soon after birth. This causes bile to remain in the liver, where it starts to destroy liver cells rapidly and cause cirrhosis, or scarring of the liver.

What causes biliary atresia?

The cause of this disease is not known. In some infants, the condition is most likely congenital, meaning present from birth. About one in 10 babies with biliary atresia have other congenital defects. Some research indicates that an early viral infection may be linked to biliary atresia.

Scientists do know that biliary atresia is not hereditary; parents do not pass it on to their child. It is also not contagious, and it is not preventable. It is also not caused by anything an expectant mother did or did not do.

What are the symptoms of biliary atresia?

Symptoms of biliary atresia usually appear between two and six weeks after birth. The baby will appear jaundiced, with yellowing of the skin and whites of the eyes. The liver may harden and the abdomen may become swollen. Stools appear pale grey and the urine may appear dark. Some babies may develop intense itching.

How is biliary atresia diagnosed?

Since other conditions lead to symptoms similar to those of biliary atresia, doctors must perform many tests before a conclusive diagnosis can be made. These tests may include blood and liver tests, an ultrasound examination, X-rays and a liver biopsy, in which a small amount of liver tissue is removed with a needle for examination in a laboratory.

How is biliary atresia treated?

Unfortunately, there is no cure for biliary atresia. The only treatment is a surgical procedure in which the blocked bile ducts outside the liver are replaced with a length of the baby’s own intestine, which acts as a new duct. This surgery is called the Kasai procedure after Dr. Morio Kasai, the Japanese surgeon who developed it.

The aim of the Kasai procedure is to allow drainage of bile from the liver into the intestine through the new duct. The operation is completely or partially successful about 80 percent of the time if performed early (before 3 months of age). In babies who respond well, jaundice and other symptoms usually disappear after several weeks.

In cases where the Kasai procedure does not work, the problem often lies in the fact that blocked bile ducts are “intrahepatic,” or inside the liver, as well as extrahepatic, or outside the liver. No procedure, except for liver transplant, has been developed to replace blocked intrahepatic ducts.

The Kasai procedure is most successful in babies younger than 3-months-old, so early diagnosis is important.

If the Kasai procedure is not successful, the only other option is a liver transplant. However, a suitable donor organ must be found quickly, before damage to the liver from the backed-up bile becomes deadly.

What happens after surgery?

The aim of treatment after surgery is to encourage normal growth and development. If bile flow is good, the child is given a regular diet. If tests show that bile flow is reduced, a low-fat diet and vitamin supplements will be required, since the absorption of fats and vitamins is impaired.

What is the outlook for babies with biliary atresia?

Without successful treatment, few children with biliary atresia live beyond age two. In some cases, where the Kasai procedure is completely successful, the child may recover and live a normal life. However, in most cases, even when surgery is successful, patients will suffer gradual damage to the liver. These children will need specialized medical care throughout their lives, and many will ultimately need a liver transplant.

Is a liver transplant the solution?

In children with biliary atresia, a liver transplant is generally not attempted unless the Kasai procedure has been tried. In cases where that operation is unsuccessful, the child may become a candidate for a liver transplant. Success depends on the timely availability of a matching donor liver. Fortunately, survival rates for liver transplant recipients have increased dramatically with improved surgical techniques and the development of drugs that help overcome the problem of organ rejection.

What can the family do?

Watching a newborn suffer from biliary atresia is a heart-breaking experience. Parents are frustrated because so little is known about the disease and treatment options are so limited. Many parents find comfort in support groups because it allows them to talk to other parents in similar situations. Finding out that others feel the way they do, and learning how other parents are coping with a child’s disease, is often a great comfort.

Blessings Beyond Measure...God Saved Jan!

Monday, June 15, 2009

How do we cope with difficult times?

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Coping with Biliary Atresia

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