Doing our part to hasten a cure for our daughter’s PFIC3
A few years ago I received an unexpected phone call from Birmingham Children’s Hospital here in England. Action Medical Research, a British charity working to…
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How we navigate our son’s response to cold and flu season
Nearly all parents know that their little kids are walking germ factories. Having our boys in day care and elementary school creates all kinds of…
How we’re navigating day-to-day life with a liver disease
Raising children means daily challenges. One day they’re the sweetest kids in the world; the next, you wonder how someone so small could bring forth…
Medical play specialists saved the day for our daughter
We had a breakthrough this week with our 4-year-old daughter, Eva, who has progressive familial intrahepatic cholestasis (PFIC). I think we’ve finally found the…
It’s hard explaining my son’s Alagille syndrome diagnosis to strangers
Before my son Finley was born, I had minimal exposure to the rare disease world. I knew about the more publicized conditions and had participated…
Having a great day care center makes a huge difference for our son
I feel fortunate that our 3-year-old son, Finley, has been at the same day care since he was an infant. Our older son, Jackson, bounced…
How we manage the itching caused by my son’s liver disease
I don’t exactly love any of the symptoms my son Finley experiences because of Alagille syndrome, but the dreaded itch wears on me…
Switching doctors always prompts new questions and a bit of anxiety
Looking back at our son Finley’s Alagille syndrome diagnosis at just a couple months of age, I appreciate that we were fortunate to start…
Ups and downs of back-to-school shopping for my son with Alagille
Even though my son Finley is still in day care, we enjoy the back-to-school shopping phase. He may not be starting a new grade, but…
My daughter’s PFIC reminds me why organ donation is important
This year, the U.K.’s National Health Service is marking the 30th anniversary of the establishment of its Organ Donor Register, which was founded to…
