July 31, 2026
A Lot Has Happened: Update After 3 Weeks at BCH

It has been a full 3 weeks here at Boston Children’s, and
there is a lot to share.
Remi has been diagnosed with malnutrition, something that is
unfortunately common in children with biliary atresia, as the
liver’s inability to process bile affects how the body absorbs
nutrients. On July 22nd, an NG tube was placed to help him
get the nutrition he needs and gain some weight in
preparation for transplant. He has also completed his full
transplant evaluation and has officially been listed on the
national transplant waiting list.

The harder news is that his liver disease is continuing to progress, and the
complications have reached a point where it is not safe for Remi to return home for the
time being. For now, the hospital is where he needs to be, and so that is where we will
be too, for as long as it takes.
As parents, watching your child go through this at such a young age is heartbreaking in
ways that are hard to put into words. So much of Remi’s first year looks different than

we had dreamed. We wanted ocean trips, backyard mornings, time with family, and
watching him grow alongside our dog. Instead, we are living in a hospital room, and we
are choosing, every single day, to focus on the gift of being right by his side.
Remi is incredibly resilient. We are grateful beyond measure for his team here, and for
all of you holding us up from afar. We will keep you updated as we wait and hope for a
liver for our boy.
— Remi’s Parents