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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
Meet Jax
 
 

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
 
 
Karsyn

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
 
 
Ember

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
 
 


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

 

Meet Xander
 
 
Willow




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
 
 
Malaki


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
 
 
Eli

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
 
 
Matthew
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
 
   
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
 
   

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
 
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.
Meet Jennifer
 
   
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
 
   
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
 
   

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
 
   

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
 
   
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
 
   
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!
Meet Stefanie
 
   
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
 
   
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
 
   
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
 
   
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.
Meet Raquel
 
   
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
Meet Harris
 
   
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
 
   
  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.
Meet Taytum
 
   
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
 
   
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
 
   
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
 
   
DOB 7.19.10 Kasai: 9.1.10 Transplant: 1.28.11
7 hospitalizations, 5 surgeries, 4 blood transfusions and countless diagnostic tests, procedures and lab work…Weston has covered more medical mileage by the age of 8 months than most adults.Weston war with Biliary Atresia started when he was just 3 weeks old. He had his Kasai at 6 weeks and ultimately, his liver transplant at 6 months. His recovery from the transplant has had its fair share of bumps along the way, but Weston has always smiled, smiled, smiled his way through them. He is such an amazing little boy. We are so incredibly blessed.I think about his donor and their life saving gift everyday; especially when I look into my son’s clear, beautiful eyes that show no signs of jaundice. As always, we ask: if you pray for Weston, please give thanks for his hero, his guardian angel…his donor and their beautiful, generous family. >>>>> More
Meet Weston
 
   
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
 
   

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
 
   
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
 
   
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! >>>>> More
Meet Paityn
 
   
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
 
   
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!' . >>>>> More
Meet Jayden
 
   

DOB: 12.30.09 Kasai: 3.1.10 Transplant: 8.3.10
Jake's Mom felt they were in the worst possible location, not having a place where doctors and surgeons are experienced with this disease. They came to find that South Region has the largest amount of donor offerings and the least amount listed. Jake was recently admitted to the hospital with elevated liver enzymes. After a liver biopsy showed mild rejection, medication was used to reverse the rejection. He will have to see a immunologist/ allergist to find this catalyst. Jake will be turning 1 soon and his family cherishes everyday they get to watch him laugh and play!>>>>Video Montage
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Meet Jake
 
   
DOB: 6.8.10 Kasai: 8.25.10 Transplant: 11.29.10
Rowan's journey began with a two week stay in the NICU due to breathing problems. Her kasai never worked and her bilirubin skyrocketed to a 27. She was extremely yellow and was hospitalized for cholanghitis in October. Her condition never improved and she was listed with a PELD of 32. After 10 days of waiting Rowan received her gift of life. She's fought a few hiccups since transplants but her LFTs her perfect and she is now recovering and doing wonderful.>>>>> More
Meet Rowan
 
   
DOB: 5.1.10 Kasai: 6.18.10 Transplant: 10.20.10
Lauren had a couple of stays in the hospital for cholangitis and ascites.  During her stays, it appeared that there was still hope for the Kasai to work.  However, she was not gaining weight, the ascites continued and she needed blood transfusions to get the levels in her blood where they needed to be.  Then on September 17, 2010, Lauren was listed on the liver transplant waiting list with a PELD of 15, and her Father began the official screening to be a living donor. On October 20, 2010, Jim saved his daughters life.
Meet Lauren
 
   
DOB: 5.18.08 Transplant: 12.31.08
Braedyn had some mild jaundice after birth but it was dismissed as normal newborn jaundice. Her Mom was told her hold her in the sun for a few days. She was diagnosed with biliary atresia at 3 1/2 months of age and too late for kasai. She was listed in October and received a cadavaric liver at the end of December. She stayed a short 10 days post op and has been hospitalized a few times since transplant, but never liver related causes. Braedyn's Mom says: "We thank God every day for her donor family."
Meet Braedyn
 
   
DOB:6.20.09 Kasai: 7.23.09 Transplant: 1.21.11
Easter Sunday 2010 Austin was Airlifted to UCLA in critical condition and was septic. Austin was placed on the transplant list. Austin did really well after this major hospitalization and only had a few minor ones to follow. A few months later he started to have minor bleeds and they decided to do a scope. This is when we found out that Austin had a lot of varices and they started him on medications to treat them. On January 7 2011 Austin started to throw up blood and was rushed by ambulance to the hospital. He received multiple blood transfusions and was in the PICU for 3 days before being air lifted to UCLA. Once he arrived at UCLA they did a Scope to stop the bleeding varices and started him on multiple medications. After a few days Dr’s Finally told us that Austin had 3 months to live with out a new liver. On Jan 21 2011 Austin got his life saving new liver from His Uncle Ronnie. Austin and His Uncle Ronnie are doing Great and have started the road to recovery.

Meet Austin
 
   
DOB:6.25.10 Kasai: 8.30.10
In utero it was discovered Quinton had a choledocal cyst in the area of his liver. Because of the small size, doctors were not concerned about the cyst. Persistant jaundice put them in the hospital and then it was determined that the syst was blocking the bile ducts. He underwent the kasai to help bile flow and remove the cyst. Quinton had cholangitis in November but is now doing alot better! >>>>> More
Meet Quinton
 
   
DOB: 9.3.09 Kasai:11.09.09
On September 3, 2009 we were so blessed to have Shae come into our lives.  She was your typical 18 inch, 7ln 7 ounce baby, except for one thing, her skin and eyes were a very yellowish color.  The doctors said that was sometimes normal right after birth, and they put Shae under a blue light in hopes that would correct it.  After a week in the hospital her billirubin levels finally started to drop.  We went home, and on her 2 week check up her levels started to rapidly go up again. We were sent down to Children's hospital and after a few days of testing she was diagnosed with Biliary Atresia.   After talking and learning about B A, the doctor informed us that there is a procedure called The Kasai Procedure, they said it has a very low success rate and the reason for the surgery was to “buy time” until Shae was big enough to have a liver transplant. 8 Months after her Kasai the same doctor said 'Remember when I told you that the Kasai procedure doesn't typically work? Well, I think it did." 
Meet Shae
 
   
DOB:6.15.05 Kasai:8.18.05 Transplant: 2.7.11
At two weeks of age Dylan started screaming uncontrollably, not sleeping, developed a rash all over his body and abnormal stools. It wasn't long before they knew it wasn't colic and heat rash. After kasai, Dylan's labs took several months to come down to normal. He was on lots of medicines for five years helping his body deal with his damaged liver. In late 2010 Dylan suffered a massive GI bleed. This meant transplant was near. Dylan's Father donated to part of his liver and saved his sons life. The Levy's are expecting their second child and know Dylan has a bright future ahead.>>>>> More
Meet Dylan
 
   
DOB: 12.7.11 | Kasai 2.2.12
David James was a perfecly happy and healthy baby. His Mom thought the His Mom thought the yellow in his eyes were typical new born jaundice. When she took her daughter to a well check-up the pediatrician, the doctor said 'Your baby is yellow!' and that started the process of diagnosing Biliary Atresia. DJ is listed for transplant due to varices and portal hypertension at Medstar Georgetown Hospital with a PELD of -4.
Meet DJ
 
   
DOB: 6.12.09 | Kasai 8.09
Taytum's journey began in 2009 when we were blessed with our little angel at 30 weeks gestation. We knew right away that she was a fighter! 3lbs.1oz and no ventilator-WOW!! Unfortunately just as we were preparing to leave the NICU and take her home the devastating news arrived. Our little pumpkin had a life threatening liver disorder-Biliary Atresia. Instead of loading her into our car, she was loaded into a Riley Ambulance and our long journey began. Taytum received the Kasai in August of 2009 and despite quite a few speed bumps we have been blessed. She continues to thrive with her existing liver, however we know this is a temporary situation and transplantation is inevitable. She is a true joy and born to be a little fighter. Go Taytum Go!!!
Meet Taytum
 
   
DOB 4.24.12 Kasai: 7.5.12
Kinley seemed to be a healthy 8lb 5oz baby at birth, but was just a little bit jaundiced. When she went for a 2 month well-baby visit, her doctor was concerned that she was still jaundiced and her liver felt enlarged. Labs were done and she was sent to a specialist and was diagnosed with BA and underwent a Kasai surgery at 10 weeks old. She initially did well and her jaundice decreased. After 1 month at home, she started running fevers and was hospitalized for 3 days for a suspected case of cholangitis. She continued to get more jaundiced and her labs got worse and it was determined on 09/27/2012 that her Kasai had failed. She was officially listed for a liver transplant on 11/09/2012. She is on the list with a PELD score of 9, however, her condition is currently somewhat improved, so we are hoping that Kinley will be able to grow a little more before transplant. Her dad has also been tested and can be a living donor for her if she grows a little more as his liver is too large for her to receive right now. She is 8 months old and a very happy active baby.
>>>>> More
Meet Kinley
 
   
DOB 12.30.09 Kasai: 2.12.10
At 24hrs old it was noticed that she was jaundiced. She was sent to NICU and that is when the series of test started. After a week in NICU she came home with lower bili levels. Over the next month we went through test, medications, doctor visits and finally a visit to Children's Hospital LA for her liver biopsy. The day after her biopsy was when she was officially diagnosed with BA. Her brillian surgeon said everything went well, her liver had very little scarring, bile started flowing, bili levels came down and in a matter of 15 days she was headed home. She has not been back to the hospital, aside from normal check-ups and participating in the BASIC study. We thank God for her everyday and are so grateful. Molly talks about her special scar and understands what having a healthy liver means.
Meet Molly
 
   
DOB 4.26.13 Kasai: 5.24.13
At Children's Hospital of Philidelphia (CHOP) Avielle was born weighting 8lbs 2 oz. she looked relatively healthy, except she cried a lot & didn't seem to be putting on weight. At her 2 week follow up appointment she was only 7 lbs 12 oz. As a mother of 4 children I knew something was wrong. Two days later, she has white stool. After labs, they discovered her bilirubin was elevated. She was diagnosed at CHOP in late may, and had her kasai the 24th. During the kasai they found she had biliary atresia syndrome variant. She has several anomalies such as: polysplenia, preduodental portal vein, malrotation, and an interrupted inferior vena cava. Avielle has bad reflux, but other than that seems to be stable. Her bilirubin is staying steady, but not where the doctors would like it to be. They have prepared us for the possibility for a transplant in the near future.
Meet Avielle
 
   
DOB 9.10.10 Kasai: 11.10 Transplant: 3.11.11 Transplant2: 3.18.11
Lucia received her first transplant on March 11 and within days it failed. On March 18, just a few days waiting at the top of the list she received a second gift of life. She is doing great now with perfect liver numbers.
Meet Lucia
 

 
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