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Karsyn is 8 years old now and just completed 1st grade at Towanda Elementary. We live in Bloomington, IL.
Our journey began when Karsyn was six weeks old. It was Easter Sunday and a friend mentioned to me that Karsyn looked a little "yellow". The next day I contacted her pediatrician and we went in and had bloodwork and an exam. Dr. Rojan called us into his office and said, "What is going on here we cannot take care of in Decatur." We were paralyzed with fear as you can imagine. He sent us immediately to St. Louis Children's Hospital for further tests. We asked for her to be put on as many prayer chains as we could, and set off for St. Louis the same day.
In St. Louis we met with several doctors and Karsyn endured many, many tests to determine a diagnosis. At first they thought she had Biliary Atresia, an underdeveloped, blocked or nonexistent duct between the liver and intestine.
After many tests, this was ruled out thankfully as they began to see movement of bile through the duct after after a third hyda scan. The next diagnosis was Alagille Syndrome. A syndrome affecting the body's structural systems. She only had one symptom of this, and normally is required to have three to be diagnosed. She was under this diagnosis for several years.
After watching the bloodwork over time, specifically her liver enzymes, it was determined that one of the liver enzymes activity was not consistent with Alagille Syndrome. She was then diagnosed with Progressive Familial Intrahepatic Choleostasis (PFIC) Type I. Her treatment did not change with the new diagnosis. This is genetic and is puzzling since neither of us have any history or current episodes of liver disease in our families. They said it could have begun with a gene mutation with her. Just one of those unfortunate things! It is very rare as well, 1 in 70,000 children have this liver disease.
Karsyn does not have enough small bile ducts, which results in the bile backing up in the liver causing fibrosis (scar tissue) which can or most likely will eventually lead to cirrhosis of the liver. Additionally, the bile back up results in jaundice of the skin and whites of her eyes. Furthermore, the biggest issue she deals with is the pooling of bile under the skin (bile acids and salts) causing severe puritis for her. Puritis is an internal itch that causes many different side effects for her. One of these is sleep deprivation from waking up nightly due to the itching. Karsyn will scratch until she bleeds and then continue to dig in the blood if she is not stopped. In older children and adults, it causes them to often be suicidal as the itching literally "drives them crazy". It is awful for her. This has progressively gotten worse as Karsyn has gotten older, but has remained about the same the last few years. We opted for a surgery two years ago called biliary diversion. The surgery had a 50% chance of alleviating the puritis either altogether or somewhat. They took out 12 cm. of her small intestine and sewed it to her gall bladder and routed it out into an ostomy bag. This was to provide another outlet for the bile to help alleviate the itching. At first it seemed to help a little bit, but long term it has not helped. It is beginning to cause body image issues with her as well. Thankfully, this procedure will be reversed with Karsyn's transplant.
Post transplant, Karsyn will have no more jaundice, no more itching and she will grow regularly. The liver disease has stunted her growth as she has malabsorption issues. She cannot absorb the fat soluble vitamins, A,D and K and has to take supplements. Additionally, the liver disease causes her to have clotting issues at times, which is another major function of the liver.
After much prayer and time, God has led us to the consideration of transplant. We have prayed for healing for Karsyn for years, and now believe transplant will be His way of healing Karsyn. We personally hoped she would never have to undergo this surgery. It was definitely one of the most important and difficult decisions we will ever make as parents. Thankfully, we have a strong faith and many prayer warriors and wonderful friends and family lifting us up and standing by us through this long journey. Prayer has been our lifeline!!! Thanks to all who have prayed and continue to pray for Karsyn and our family! We love you and praise God for you daily!