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DOB: 5.26.09 | Kasai 7.21.09 | Transplanted: 4.22.10
Jax had his kasai at exactly 8 weeks of age. His bilirubin slowly decreased and hovered around 2. We were told he could go for many years without needing a transplant. Then he was hospitalized for cholangitis, became extremely sick and immediately put on the transplant list. He was unable to have a living donor because of a clotted portal vein. A 15 month old little boy saved his life. Besides some elevated EBV numbers, he's done amazing post transplant. >>>>> More |
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DOB: 6.25.09 | Kasai: 7.21.09 |Transplanted: 5.25.10
Aylianna received 60% of an 8 year old boys liver. She is doing very well since transplant. Ayli's Mother was in the final stages of testing to be a living donor for her daughter. After only 6 days on the UNOS listed, they got the call an organ was available. >>>>> More |
Meet Aylianna |
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DOB: 12.19.08 | Kasai: 2.13.09
Karsyn's bilirubin was .01 last time she had a checkup. She goes once every 3 months to have her levels checked. She's doing wonderful. |
Meet Karsyn |
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DOB: 5.30.08 | Kasai 8.14.08 | Transplanted: 11.24.08
Today Ember is a perfectly happy, healthy toddler. She gets labs drawn once a month and so far they have always been perfect. She has had no bouts of rejection since her transplant. Aside from taking medicine every day and her scar, you would never know she was ever sick. >>>>> More |
Meet Ember |
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DOB: 11.17.07 | Kasai: 01.08.08| Transplanted: 10.16.08
Xander is a very sweet and happy toddler. Since transplant he has had several obstacles but for the most part he is healthy. Xander is just your typical two year old mimicking his older brother and generally causing him a lot of grief. We thank our angel donor every day for the precious gift of life. >>>>> More
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Meet Xander |
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DOB: 1.14.10 | Kasai: 3.9.10
Willow has 2 degrees cirrhosis on her liver. Liver numbers are still elevated. She attends BA Clinic at Riley Hospital in Indianapolis, IN once a month. She is on several meds a day. We are struggling to get weight on her. She is a very happy baby, you would never know she has liver disease. |
Meet Willow |
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DOB: 9.24.08 | Kasai: 11.6.08 | Transplanted: 5.12.09
After Kasai his billirubin was low and he wasn't jaundiced, though he had other issues such as problems clotting, extreme ascites and was unable to gain weight. After a 5 week hospital stay, Malakai was placed on the list on March 21, 2009. After two calls with livers that didn't work, his mom went through the testing for living donor. Their surgery was scheduled for May 18 but he got "The Call" on May 12, 2009. The first year post transplant was difficult, including an obstructed bowel which led to emergency surgery, hospitalization for dehydration, internal bleeding and food allergies. He's had a very stable last few months and he's thriving like any other kid!
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Meet Malakai |
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DOB: 2.14.09 | Kasai: 3..31.09 | Transplant:11.10.09
During his 6 week wait he wasn't really sick and was was having trouble with clotting and Ascites Even though it was only a short 5 months ago that Eli was transplanted, his Mom says it's a distant memory because he's doing so well now.>>>>> More |
Meet Eli |
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DOB: 7.24.89 | Kasai: 9.28.89
Matthew has defied the odds of BA. He's a healthy 19 year old that hasn't had a liver transplant. He's had his struggles but has dedicated his life to sharing his story and helping others cope and understand this disease. >>>>> More |
Meet Matthew |
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DOB: 8.20.82 Kasai: 10.28.82 Transplant: 4.31.84 2nd Transplant: 4.19.85
Gemma, aka Gemz, is now 28, she leads a perfectly normal life aside from some restrictions to certain things that may react with her anti-rejection medicine. |
Meet Gemma |
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DOB: 3.12.09 Kasai: 5.1.09 Transplant: 2.13.10
Aiden is 3 months post transplant, he is currently being treated for a mild rejecton which is common in the first 6 months. Besides that Aiden is doing wonderful! He is thriving and hitting mildstones that seemed impossible before transplant.
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Meet Aiden |
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DOB: 10.3.78 Kasai: 12.78
Jennifer had her Kasai at Riley Children's Hospital when she was 6-weeks old. She had to have 1 revision to her Kasai but has done very well since. Jennifer is currently 31 years old and has a beautiful, healthy, 17-month old daughter of her own now, Ava "Riley" Watson. The photo is one with her Surgeon Dr. Grosfeld, her Gastroenterologist Dr. Fitzgerald, Jennifer, her husband Aaron and their daughter Ava. Jennifer took Ava over to Riley Children's Hospital when she was 2 months old to meet her Dr's.
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Meet Jennifer |
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DOB 11.17.80 Kasai: 12.80 Transplanted: 5.23.08
Ryan lived on his kasai for 26.5 years and then got sick in the summer of 2007 with secondary biliary cirrhosis. He waited on the tx list for 6 months. He had 6 months of post tx complications, rejection etc culminating in another surgery to remove scar tissue that was causing blockages, fever, etc. He has been great since. He is a weightlifter and has regained about 95% of his strength and physique. His wife was the first liver transplant perferformed in Florida due to Alpha-1. |
Meet Ryan |
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DOB12.22.09 Kasai: 2.5.10
Noah has acid reflux coupled with BA. He vomits at least once a day. Due to this he is not gaining much weight. March, 2010 he suffered a bout of cholonghitits. His bilirubin is down to a 2.8, which is the lowest it's ever been. >>>>> More |
Meet Noah |
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DOB 4.10.08 Kasai: 5.08 Transplant: 2.9.09
Riley was five weeks old when she had her kasai. It worked well for a few months then in July 08 they were told she would need a liver transplant. She was always 'too healthy' to be listed. Finally in January 2009 she was listed and on Febuary 9, 2009 she received her Gift of Life.
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Meet Riley |
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DOB11.19.08 Transplant: 5.22.09
When Ellie was diagnosed at 3 months of age, her liver was too damaged to attempt a kasai, so she was immediately evaluated and listed for a transplant. During her 8 week wait her condition continued to deteriortate. Her Mom was evaluated as a living donor. On 5.22.09 Ellie received 20% of her Mom's liver. She's one year post-transplant and Ellie is doing wonerful!
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Meet Ellie |
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DOB7.6.06 Kasai: 9.14.06
Abby was born with jejunal atresia and a duodenal web, which was discovered via prenatal ultrasound. After her initial corrective surgeries, it was learned that she had also developed Biliary Atresia. She was worked up with her Daddy being a donor match. We had planned by age 6 months to do transplant, as her Kasai was deemed an initial failure. But slowly, her bili kept decreasing. She is currently off the transplant list, and is a happy, active (almost) 4 year-old.
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Meet Abby |
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DOB 11.5.90 Kasai: 2.91 Transplant: 12.24.91
On 12.11.91 Stefanie started puking up blood. Her stomach was so swollen from the Ascites that the pressure from her stomach caused part of her esophagus to bleed, or rupture. At that point she had a 19 inch waistline, and was only a year old. That day, she was put on the waiting list for a liver. Her blood type is B+ which is pretty rare. According to the American Red Cross, only 9% of people are B positive, so they assumed she would be on the waiting list for possibly a long time. But, she was only on the waiting list for 13 days! On Christmas Eve of 1991, she had her liver transplant. The biggest problem Stefanie faced post transplant was elevated liver panel. Come to find out it was due to Sunny Delight (drink). It contains grapfruit juice and was causing her numbers to fluctuate! Through the years she has also learned that eating peanuts can mess up readings! She is doing wonderful now and is happy and healthy!
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Meet Stefanie |
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DOB4.14.09 Kasai: 5.15.09
Denim was diagnosed 5/8/2009 at 3 weeks old he had been admitted for 24 hr observation for a nasty cough and cloudy lung xray spent the night doing lung xrays blood work and nasal swabs. His cough seemed to get better over night and they didnt find anything wrong but as they were doing rounds the morning we were to be released the Dr noticed his coloring... at this point I knew he was a little bit yellow but never thought anything about it he was only 3 weeks old thought no big deal. They told me they wanted to do 1 more test before we went home they wanted to check his bilirubin...Thinking the worst it would be would maybe be some time under a light I still didnt think much about it. A couple hours later the Dr came back and told me she had called in a GI and explained the difference between direct and indirect bilirubin and explained that Denim's was very high. Another hour or 2 passed and we met our GI for the first time a few minutes after that heard the words Biliary Atresia for the first time...... Denim had his Kasai at 5 weeks old and has had one bought of cholangitis other than that his labs seem better every time they're drawn. Transplant hasn't been mentioned since before his Kasai he's a happy healthy wild little boy who loves balls animals and his sisters! |
Meet Denim |
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DOB 10.21.06 Kasai: 7 Weeks Old Transplant: 5 Months Old
Her Kasai failed and she was placed on the transplant list when she was 5 months old. She was farther diagnosed with Ricket and because of that she suffered 4 broken bones. On september 24 th 2008 we got the call. She is now doing good besides her battle with EBV. >>>>> More |
Meet Addison |
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DOB 3.8.06 Kasai: 6.06 Transplant: 1.07
After a rather tumultuous birth (hypoxic ischemic encephalopathy) and a ten day stay in Toronto's Sick Kids Hospital, he was released to go home. We enjoyed nearly three months at home with Keenan until his diagnosis of biliary atresia and his subsequent Kasai surgery. He was listed by August. We were fortunate enough to have a living related donor matched to him, his Aunt Sara, and we were set for transplant for that October. However, as unpredictable as the Kasai is, it had started to work and his transplant was postponed until a time in which his health was poor enough to warrant it. By the next January Keenan was transplanted and recovered quite well and we were sent home.
Today Keenan is a healthy and happy four year old boy.His transplant clinic visits have been every six months now for nearly three years now and his pediatrician/blood work appointments are every three months. He plays soccer, enjoys traditional Aboriginal drumming, helping out with his little sister and will be starting Junior Kindergarten this September. |
Meet Kennan |
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DOB 9.5.08 Kasai: 12.9.08 Transplant: 8.25.09
In May we were told she would be added to the waiting list. Within a month, a co-worker of her Mother's volunteered to be Raquel's donor. Everything went amazingly smooth and both surgeries were successfully performed on August 25, 2009. Raquel's EBV has been high for a long time, around 300,000 going down just to creep right back up. She had one lymph node biopsy in January but it was nothing. The doctors just wanted to be super safe. The node was tiny but still perceptible .Raquel continues to grow and is doing well. You would never guess she was anything besides perfectly healthy.
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Meet Raquel |
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DOB 1.31.10 Kasai: 3.17.10
He is such a tough little boy and has an Older brother and sister that adore him. We had some problems with weight and development until we got him to start taking 24 cal formula and now he has finally made it on the growth chart and caught up developmentally. He has had 3 hospitalizations since surgery for cholangitis with the last being by far the worst with positive blood cultures. His bili likes to stay around 1.7 and spikes to the 2's when he is infected. His Kasai is considered a sucess. Now if only I could get him to sleep at night!>>>>> More
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Meet Harris |
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DOB 7.9.04 Kasai: 8.20.04
Joe is 6 years old and doing well with a gallbladder kasai only. This is a modified version of the kasai where the gallbladder is used to drain the bile. He was lucky that at one month old his aunt, a NICU nurse, changed one diaper and urged his parents to get him checked for biliary atresia. He had his gall kasai at 5 ½ weeks of age. Joseph is an active boy who likes to play with his 3 siblings , which include a twin brother. Joe loves baseball and just about any sports. Joe has a great sense of humor and makes his family laugh often! |
Meet Joe |
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DOB 6.12.09 Kasai: 8.09
Taytum Mary Geyman she was born 06-12-2009 at 30 weeks gestation-3lbs and 1oz! She was a mystery for the doctors providing her care because biliary atresia is, as you know, rare but even more so in a preemie. She had her Kasai in August of 2009 at Riley Hospital for Children weighing in at only 4 pounds. What a blessing to have such a talented surgeon!!! Taytum is doing remarkably well. She is one of five children-#4 in line. We are so thankful for her health and hope she continues on this path.
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Meet Taytum |
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DOB 4.21.06 Kasai: 6.15.06
We already knew she had a choledocal cyst on or near the top of her Gall Bladder, this was spotted at my 20 week scan. But we didn't find out about the Biliary Atresia till she was 6 weeks old. Her stools had gone pale and she was still jaundice, i'd already been told to look out for such symptoms due to the location of the cyst.
Nicole has not been on any medication since June 2007, exactly 1 yr after the Kasai.
She's doing so well she's now a mini fundraiser herself and is doing a Mini Great North Run this weekend for the Childrens Liver Disease Foundation. If it wasnt for the huge scar she has noone would ever guess she has a health problem, let alone Liver Disease. My Little miracle! |
Meet Nicole |
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DOB 4.28.10 Transplant: 8.17.10
Noelle was slightly jaundice from birth. At about 2 1/2 months of age, she started to become "colicky". After trying to treat her for possible reflux and food intolerance, her condition rapidly deteriorated one weekend. On August 9, she was admitted to the hospital, after labs in the emergency room showed poor liver function. (Her clotting factors were so low at the time, she was in liver failure.) She was treated for the poor clotting and officially diagnosed with biliary atresia on August 12, 2010. At 3 1/2 months old, her biopsy revealed her liver was too cirrhoted and fibrotic for a kasai to be effective. She also had portal vein hypertenion (and we later found out she had cholangitis as well). She was officially listed for a liver transplant on August 16, 2010. Less than 24 hours later, a pediatric liver had been found! Noelle received her gift of life at 11:20 p.m. on Tuesday, August 17, 2010. She was in the PICU less than 24 hours and was discharged from the hospital 10 days post-transplant! She has had to take blood pressure medication, due to her other transplant medications. Other than that, her recovery has been amazing to this point!>>>>> More |
Meet Noelle |
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DOB8.24.06 Kasai: 11.06 Transplant: 1.26.07
Alex is very active 3-1/2 years post liver transplant.He was diagnosed with Biliary Atresia at 10 weeks when his Kasai was preformed. At 5 months, Alex was transplanted and his mom was his living liver donor. Since transplant, Alex has had additional surgeries to connect a secondary Bile Duct and repair damage caused by Esophageal Varices. It is believed that the Varices were caused by Portal Hypertension. He has also had multiple rejections episodes that have been corrected with medication changes. Just this year, Alex was diagnosed with Hypoglycemia possibly resulting from the beta-blocker he takes for the Hypertension. Also this year we've found ourselves facing "Normal Kid Stuff" ... like ear tubes, and stitches on his forehead for an ugly cut. Overall, Alex has been growing and developing at a rate that no one would have bet on. He is now an everyday "BOY". |
Meet Alex |
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DOB 7.19.10 Kasai: 9.1.10
We spent the first three weeks of his life in and out of the pediatrician's office for poor weight gain. We saw a different doctor from the practice each time we went. At three weeks, he had still not regained his birth weight. That coupled with a suspicious rash led the doctor to send us for blood work; which included a bilirubin level because Weston was still jaundiced. (something that I brought up with every doctor, at every appointment up to this point...) Our doctor called us that evening and informed us of his high bilirubin level and admitted us to the children's hospital. Weston underwent 24 hours of poking and prodding and we left not knowing anything. The next three weeks were spent continuing the diagnostic testing and meeting with an array of doctors. At 6 weeks 2 days old, an intraoperative cholangeogram confirmed the diagnosis of Biliary Atresia. The surgeon opened and performed Weston's Kasai procedure right then and there. Weston blazed through his surgical recovery with flying colors. Upon discharge, his liver panel had improved tremendously. Although his labs had not changed two weeks post-op, we are still very hopeful that the Kasai will work for Weston and he will not need a liver transplant. He is our hero. |
Meet Weston |
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DOB 8.6.03 Kasai: 12.9.03
After birth he progressively got more yellow, turning almost green. The doctor had a blood test ordered and his bilirubin was elevated, but nothing the doctor was concerned about. .At almost 4 months of age now, we took him for probably the 4th time to the doc for the same reason, this time the doc said we needed to visit a GI (liver) specialist. He was diagnosed with BA. We decided after so many prayers and thought to go ahead with the kasai since we weren't sure if he could wait to recieve a transpant. Within 24 hours, his color returned to normal, he plumped right up. Evan has had so many up's and down's since then, but we know we made the right decision. Usually the Kasai doesn't last too long, but Evan is now 7 and still going strong with his scarred liver. He had been admitted to the hospital so may times for various reasons, portal hypertension, ascites in his abdomen, colongitis, 2 broken arms from the brittle bones, and more. The doc says a transplant is still in his future, but for now we just watch him and hope for the best. He is a very smart boy, he has been a little delayed from the many hospital stays, but with therapy from great people he has caught up just fine and is in regular 2nd grade and doing great! He even plays soccer and is in Tae Kwon Do. |
Meet Evan |
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DOB 11.29.86 Kasai: 12.31.86
I was diagnosed at 14days old with biliary atresia. At a month old I had a kasai at the Children's Hospital in Los Angeles. I was taken off all medication at 2 1/2 and had no problems during childhood, teens, or adult years. I am married and have 2 beautiful girls, ages 4 and 2. I had a minor set back 2 years ago, but I was given medication and have been fine since then. |
Meet Stephanie |
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DOB 1.6.94 Kasai: 3.94 Transplant: 10.24.94
Steven was transplanted at just 10 months of age. He has an amazing story that gained national coverage. Click HERE to read this inspiring and touching story. Steven is 6'1! Active in Basketball, Baseball and Football. He is absolutely a normal young man with no limitations, no restrictions, living each day to it's fullest. He competed in the 2006 Transplant Olympics in Louisville, KY. He went with a group from Alfred Dupont joining Team Philadelphia. The summer of 08' he participated in the Olympics once again. This time in Pittsburgh. We all went out as a family and enjoyed ourselves once again. |
Meet Steven |
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DOB 7.20.08 Kasai: 9.23.08 Transplant: 8.9.09 2nd Transplant:8.16.09
Paityn had her kasai at 2mth but it was unsuccessful as her bilirubin remained high. She was hospitalized numerous times prior to transplant. She struggled with weight gain and infections. She was listed 12.12.08 and received her first transplant on 8.9.09. During her first transplant her kidneys shut down which led to fluid issues and she needed to be on dialysis. After just a week her new liver starged over clotting and clotted off 2 of the main arteries in her liver. She had to be rushed into emergency surgery. Then she was listed for a second liver at A1 status. The next day she recieved her gift. They are forever grateful to both organ donors and their families for Paityn would not be here without them. Paityn has not had the easiest road post tx and has had a lot of complications but she is finally moving in the right direction and feels good! |
Meet Paityn |
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DOB: 4.24.92 Kasai: 7.10.92 Transplant: 9.19.95
N'Shayla was diagnosed with BA at 2months of age. Her kasai did not work and she was put on the donors list for a new liver a few weeks after her kasai surgery. St. Louis Chidrens became a second home because it seems like we were there every other week with her having fevers and numerous infections. At the age of 3, she was given her GIFT! We have had a few struggles with meds but today at 18 N'shayla is VERY healthy and has graduated from high school and is now attending Mineral Area College in Park Hills,Mo. |
Meet Shayla |
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DOB: 12.23.08 Transplant: 7.2.10
Jayden was born with several health problems, ranging from prematurity to heart defects. He was not diagnosed with BA until after heart surgery complications and he was 6 months old...too late for kasai. He was placed on the transplant list in February of 2010 and received his gift 5 months later. He is thriving with his new liver and his development is even ahead in some areas. Mom says 'We received the greatest blessing with Jayden and now with his gift of life we are able to enjoy our blessing!' .
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Meet Jayden |
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