Meet Christina! My name is Christina, I’m from London. I was diagnosed

Hello, we are the Johnson family. My name is Shanda, my husband is Colt, our 6-year-old ALGS warrior is Camden, and we have a 3-year-old son Crew.

I am Heidi and my husband is Tim. We have two boys, Joseph is 3 and Sammy is 2. We live in Northern Utah. Sammy has Alagille Syndrome. We haven’t had genetic testing done, so we don’t know if Joseph does or if it came from either of us.

Hello family latin alliance we are the family deck lizarazo of the city of Cúcuta Colombia my name is yasmin my husband Edgar my daughter Gabriela who is a healthy girl my son Dylan Gabriel who has syndrome…

How cute is the phrase “special children, for special parents”? It generates a family and social conscience; that if you had the joy of having a special child with Alagille, a sincere love and attachement to reality awakens in you…

His name is Tomas, 3 years old. At 10 days old he turned yellow and was transferred to Mar de Plata on the coast for studies on why the yellow did not go away after 1 month of hospitalization…

Hello, my name is Lenys Oropeza, I am the mother of Nelson USECHE. We are from Venezuela. Currently Nelson is 16 years old. Nelson was born on February 26, 2005. He was diagnosed at two months of age with Alagille Syndrome due to hypoplasia of the bile ducts, vertebrae with butterfly wings, and jaundice. At that time, they did the kasai surgery and they told us that he possibly needed a liver transplant.

Brylejones Baraka, second born in our family, was born in October 2019. Five weeks after his birth he developed complications of indigestion, so we took him back to hospital where he got admitted for further treatment and investigation…

Born in Bucaramanga, we currently live in Barrancabermeja (Santander) Colombia. It was very hard for us when we found out Paula had alagille syndrome. We are a very united, fighting family and at times we are the most grateful family with the alagille organization for helping us not only emotionally but also financially…

Hello, my name is Heather G. and I live in Lowell, Michigan. I am an adult with Alagille Syndrome. I also have two biological daughters, Rebecca (17) and Natalie (11), who inherited Alagille Syndrome from me.

My name is Nayib Martinez. Native Balboa Cauca. I am currently based in the city of Popayan, Cauca, Colombia. The reason was that they sent me to the Popayan Hospital when I was pregnant, 15 years ago. I could not return to my town because I was pregnant with some beautiful twins, which made me a high-risk pregnant woman…

Kenneth came into our lives on August 05, 2011. When he was born, they quickly realized that something was not right because of his jaundice. He spent about 14 days in the NICU until we finally took him home…

I am Paige, wife to Chris, and mom to 3 kids, 6-year-old twins and a 2-year-old, Reece, with ALGS, who will be 3 yrs old in April. We live in Charleston, South Carolina. What a challenging & wild Alagille journey this has been, It started during Reece’s first month of life. No genetic link with ALGS in our family. Older siblings are healthy. This was a genetic mutation for Reece. ..

Good morning, cordial greeting. My name is Sulien Ortega from Hoyos de Popayán, Cauca, Colombia. I am the mother of twin girls, Sará Salomé Sanchez Ortega and Isabela Sanchez Ortega who were born in Bogotá, Colombia 7 months premature…

My name is Katie Harrell. My husband’s name is Garrett and our son is Reed. We live outside of Greenville, North Carolina. Our son Reed was diagnosed with Alagille Syndrome when he was almost 2 months old…

Hello my name is Angelica Gerena and that of my husband Jhon Mario Mejia of Colombian nationality, specifically from the city of Armenia, Quindío. We are the parents of Emiliano Mejía Rengifo, a beautiful brave boy who came into our lives to teach us the slowness and the purest and most sincere love that can be felt…

Our Alagille Warrior, Tanner, age 7, is the youngest of our 3 boys.  Our family of 5 lives in Olathe, KS and our team of doctors is at Children’s Mercy, Kansas City. Tanner was diagnosed pretty quickly at 6 weeks of age when we noticed he was jaundice…

Hi, My name is Roxy, I have Alagille Syndrome, and live in Henderson, Nevada.  Together with my mother, Firouzeh, and my father, Ramin, we are the Pakravan family.  I also live with my trusted furry K9s, Hunter and Oliver.

Meet Dani, Jay, Jackson and Finley Sandstrom. We live in Snohomish, WA, and our youngest son Finley was officially diagnosed with Alagille Syndrome in April 2021. Before Finley’s birth, we knew something was wrong with our sweet peanut…

We are the Bate family.  We live in Brisbane Australia.  Our family consists of our ALGSA Warrior Jordan, his twin brother, Harrison, and his parents Adrian and Leisa…

Alagille dad, Elias Otero, was recently named Fan of the Year by the Indianapolis Colts of the NFL. Otero and his son, Eli, are the father son Superfan duo who pay homage to professional wrestler Ray Mysterio, “the underdog of sports entertainment,” at every Indianapolis Colts home game, and their enthusiasm has paid off! But Otero and Eli are more than just Superfans – they are part of a family of Warriors who want to give back…

Hi, my name is Anna. Our family consists of myself, my fiancé Dillon, daughter Amelia, and two sons, Derek and Andrew. Derek has Alagille syndrome. We live in Ridgefield, WA…

We are the Bird family: Kevin, Julia, and ALGS Warrior Luke.  We live in Washington state just south of Seattle and have been fortunate to meet other ALGS Warriors in our area. Before Luke, I had no idea what Alagille Syndrome was.  Since Luke’s diagnosis in 2017, our lives have drastically changed…

We are the Lampear family, Kayla, Jon, Jackson, and Elijah. We live in Michigan. Our son Elijah was diagnosed with Alagille Syndrome…

Kenneth, our son, was born on August 5, 2011, with very high bilirubin. Dr Leonardo Holmaza at San Jorge Children’s Hospital in Puerto Rico suspected biliary atresia but said he could have one of more than 80 liver issues associated to the high bilirubin…

When my daughter, Megan, was diagnosed in 2006 there was not much information around on Alagille Syndrome. As a matter of fact, when she was diagnosed the doctors informed me to NOT Google it…

My name is Ivan Fernandez. I’m a twenty-year-old Mexican male, and this is my story…

As the mother and wife of ALGS warriors, a discovery for ALGS would mean the entire world to my family and me. Before I met my husband Corey, I never knew anybody suffering from a syndrome or disease; I knew they existed, of course, and knew of the more popular diseases but I had never met anyone who’s life was truly impacted by one…

At the age of 2 months, Isaiah was misdiagnosed with Biliary Atresia because of the yellowish skin. At first, I doubted our 3 pedia doctors- Hematology, General Pedia & Pedia Surgeon…

Keira, my niece, was born February 19, 2011, with two holes in her heart, one an Atrial Septal Defect and the other a Patent Ductus Arteriosus. Just over two years old, through routine lab work, Keira was referred to a gastrointestinal doctor at WVU Ruby Hospital for elevated liver enzymes…

It all started when Grey was born. He was 3 weeks early and was very small, born at 5lbs 4oz. His temperature was low and wouldn’t regulate, also his blood sugar was very low so right after birth he was taken to the NICU where he was supposed to get an IV and come back to my postpartum room after an hour…

Our family is relatively new to the ALGS world.  Shortly after he was born, our son Bryce was diagnosed with Alagille syndrome.  It has been a rollercoaster ride since then…

Hi, I’m José Luis. I was born on March 13, I’m 29 years old, and I’m a Warrior! I was born yellow and then diagnosed with Alagille syndrome. Growing up everything seemed normal until I had two strokes as a little kid. The first one, the strongest one, was at age 3. It left me with a right hand disability. The second one, at age 5, was less intense. Along with strokes, I’ve had a brain leakage. This affected my learning abilities. I have a heart defect called Ventricular Septal Defect (VSD), pulmonary stenosis, and a biliary problem…

My name is Shanika.  I am originally from Sri Lanka and now live in Singapore.  I have two daughters.  My elder daughter is 7 years old.  My other daughter Kayara is 28 months old and has been diagnosed with Alagille Syndrome…

Before I met my husband, I never knew anybody suffering from a chronic illness.  Corey spent his childhood suffering from liver failure.  His mother passed away when he was 10 years old, she was waiting for a transplant. My husband received his life-saving liver transplant when he was 19 years old…

Our two-year-old son Jude has Alagille.  I’m amazed at how the ALGSA community has helped our family on our journey.  I have come to know many other kids and families that share this condition and consider them my “Alagille Family “.  We keep in touch through social media and it has been a Godsend!

When Dante was born just over three years ago in El Salvador, the doctor recognized high levels of bilirubin and he remained under the phototherapy lamp in the hospital for several days…

“Every heart breaks so it can let more light in”   This was especially true for me last year. On January 31st, 2017, my sweet sister Mary collapsed and lost consciousness while at school. She was in a place she loved with her favorite teacher, Ms. Bynum. I think this was fate…

Carlie Hope was born about 4 weeks early on July 16, 2001 at 6lb 2 oz.  Carlie was so petite, red and wiggly….just perfect.  She was jaundiced at birth which led to coming home with a bili light and daily blood tests.  We knew something was off when the hospital called us back for additional labs that showed some liver involvement.  That began our journey of multiple doctor visits, labs, tests, scans and special formula.  Oh, and rocking, lots of rocking because Carlie didn’t sleep…and was quite wiggly…

My name is Erika. I’m 27 years old and I live with my boyfriend in Fredericia, Denmark. I was born with a bad liver, a narrowing on my heart, hearing impairment, a high forehead, deep set eyes and a prominent chin. Daily, I am itchy over my whole body. My illness is not something I see as a problem as I’ve gotten used to it after so many years. I was diagnosed at 14 years old…

Avery Glenn was a feisty, headstrong girl who lived her brief life to the fullest. She was born with a severe case of jaundice, which was the first sign of her Alagille syndrome, though she was not diagnosed for over two more years. Her primary symptoms were severe itchiness, which caused to rock and bang her head into the couch constantly, and her small size, which originally led to a diagnosis of failure to thrive.

Kristjan was going to be born 1 March 2010 but he came 18th February. He was blue and didn’t breath at all and it took doctors 20 minutes to get him to breathe, then he screamed. He was very little and cute.

Our 2 year old son Jude was born with a congenital heart defect called Tertrology of Fallot, which we were NOT aware of before birth. While recovering from emergency open heart surgery to place a shunt the day he was born, CICU doctors noticed he was looking more and more yellow. When they realized it was not the typical newborn jaundice, they were very concerned.