Soaking in the season of joy is extra special this year
Raising kids is tough. Speaking for myself, as someone who often recharges with alone time, having two young boys has been a struggle at times.
Alagille syndrome
Livmarli helps ease stubborn itching in Alagille syndrome after surgery
Livmarli (maralixibat) safely eased severe, treatment-resistant itching in two girls with Alagille syndrome who previously underwent surgical biliary diversion (SBD), a procedure that…
An easy transition to new vitamins is a breakthrough for my son
Our son Finley is a strong-willed and determined little guy. As he approaches his fifth birthday, he’s not shy about sharing his opinions. If he…
Parents and son are all on a path of discovery with Alagille syndrome
Our son Finley was born with Alagille syndrome in 2021. Since then, I’ve been on a journey to learn about his rare disease and…
A boys’ day out brings a welcome sense of normalcy
When I brainstorm column topics, I often find that I lean into the stress and anxiety that come from raising a child with a rare…
Used in Alagille mice, ASO therapy found to improve liver function
An experimental antisense oligonucleotide (ASO) therapy designed to boost production of the Jagged-1 protein — which is known as Jag1 in mice and JAG1 in…
Alagille made us constantly worry about child milestones
Watching your child achieve milestones is one of the most rewarding aspects of being a parent. The joy they exude when learning or accomplishing something…
Keeping that cloud of uncertainty at bay for yet another day
Alagille syndrome is such an interesting condition in that it affects every individual differently. With my 4-year-old son, Finley, who has the syndrome, much…
Why Mexican children with Alagille lag behind in getting proper care
Children in Mexico living with the complex genetic disease Alagille syndrome have limited access to essential care, including confirmatory genetic testing at diagnosis and,…
Monitoring our son’s nutrition can be extra challenging during travel
Life has been busy in our household. School has been in session for over a month, our oldest son is playing fall baseball, and we…
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