Medical play specialists saved the day for our daughter
We had a breakthrough this week with our 4-year-old daughter, Eva, who has…
Itching and Scratching — Sophie Bourton
Sophie Bourton was born in Manchester, England, and now lives in rural Herefordshire with her young family. Sophie is a symptomatic carrier for progressive familial intrahepatic cholestasis and her daughter, Eva, has the disease. Sophie has worked for over 10 years advocating and fundraising for British wildlife before her daughter’s diagnosis and since then has been increasingly focusing on advocacy for rare liver disease. She is passionate about the benefits of the outdoors for mental and physical well-being, and in her spare time she’ll be found up to her knees in mud at her children’s forest school.
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 save lives and improve the quality of life of people with organ failure. This…
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Creating memories during our daughter’s annual trip to a specialist
It’s been a special week in our household as our daughter, Eva, started preschool.
Testing, testing, testing for a healthy child
After our daughter Eva was diagnosed with the liver disease progressive familial intrahepatic…
Our journey to having a healthy child with IVF
Alongside our daughter Eva’s diagnosis of progressive familial intrahepatic cholestasis (PFIC), we learned…
Navigating the unknowns after a diagnosis of PFIC
One difficult thing about a rare disease is that there are so many unknowns,…
Itching and scratching our way to a PFIC diagnosis
My childhood neighbor was a university lecturer. One of my earlier memories of her…
