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. We spent 3 days at Children’s Mercy and it was a whirlwind of ultrasounds, a liver biopsy, x-rays, and tons of blood draws while they tried to eliminate possible diagnoses. Four weeks later we got the genetic testing back and our official diagnosis of Alagille Syndrome.
Tanner has managed to stay out of in -patient stays at the hospital and has been fairly healthy. His biggest issues currently are weight gain, itching and newly developed eye issues. He has other system involvement also. He sees seven specialists to monitor the different systems in his body to make sure things are stable. I think that sometimes the hardest part of Alagille syndrome from the parent’s point of view is managing it all, from procedures to appointments to blood draws to dreaded insurance denials, and the emotional exhaustion that accompanies it all.
Most recently Tanner has started a clinical drug trial with Albireo Pharma for their drug, odevixibat. He is sleeping through the night for the first time in his 7 years, not every night, but more often than not. It is crazy to think about a 7 year who has never slept through the night, what toll that taken on his body, and what that must feel like.
One of the best experiences we have had during the past 7 years is attending the Alagille Symposiums where we met incredible families, experts and others who want to help our children. We are truly thankful for ALGSA for the resources they have put together to help our family.