by Jordan Jankoviak | Oct 2, 2024 | Family Stories
Meet Amari My 6-year-old son Amari was diagnosed with Alagille Syndrome at 5 months old. This was after I pressured his pediatrician to send him for emergency bloodwork. His was not one of the most severe cases. Amari’s biggest concern was his liver function. His skin...
by Jordan Jankoviak | Jun 27, 2024 | Family Stories
Meet The Gladstone Family! We are the Gladstone Family from Albury, NSW, Australia. I’m Tenille, and my husband is Ben. Our family includes our eldest daughter Peighton, who has Alagille Syndrome (ALGS), and her younger sister Harper. Peighton’s...
by Jordan Jankoviak | Apr 11, 2024 | Family Stories
Meet Christina! My name is Christina, I’m from London. I was diagnosed with ALGS when I was six after my ophthalmologist noticed both myself and my dad had abnormal eye structure. It turned out I’d inherited the condition from him, but neither of his parents had it....
by Jordan Jankoviak | Feb 25, 2022 | Family Stories
Meet Camden! 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. We live in Atlanta, GA and Camden is treated at CHOA and CHOP. Camden was diagnosed with ALGS at 5 weeks old...
by Jordan Jankoviak | Feb 11, 2022 | Family Stories
Meet Sammy! 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....
by Jordan Jankoviak | Feb 3, 2022 | Family Stories
Meet Dylan and Emmanuel! Hola familia alianza latín nosotros somos la familia baraja lizarazo de la ciudad de Cúcuta Colombia mi nombre es yasmin mi esposo Edgar mi hija Gabriela que es una niña sana mi hijo Dylan Gabriel que tiene síndrome y Emmanuel Barajas que...
