Last May, Alex wrote this piece about our dear friend Emma who had been told her baby son has chronic liver disease. A year on from the diagnosis, and as a tribute to her sons, her inspiration, Emma wanted to write this piece about how she dealt with the news no mother ever wants to hear.
After the diagnosis she and her family began fundraising for a children’s liver disease charity, aiming to raise about £1,000. The total now stands at £13,500 and their fundraising efforts are continuing. If you’re moved by this story you can donate through the link at the end.
Tomorrow it will be a year ago since our previously perfect little world was turned on its head, when our gorgeous little boy Freddie Jack was diagnosed with a rare, life threatening and incurable liver disease.
We’d previously had six months of inconclusive tests, which had also given us six months of hope that, as Freddie thrived, whatever was causing him to jaundice may not be anything sinister and may just clear up of its own accord.
This couldn’t have been further from the truth and that hope was shattered as we sat in a meeting with a consultant and liver nurse on the afternoon of Monday 4th March 2013.
I thought I was prepared for the worst news. My husband absolutely would not think anything bad until we were told for definite.
The consultant sat opposite us on that day, asked us how Freddie had been, went through a couple of changes to his drugs and then told us, very casually and quickly (this isn’t a critism of him):
“The biopsy shows that Freddie has chronic liver disease.”
My head immediately felt like it had taken a very hard blow with a spade and I remember immediately thinking that maybe I hadn’t heard him right. I tried to focus and surprisingly managed to recover myself.
But then quickly came the second blow to the head, as the consultant continued delivering his news.
“Freddie has Alagille syndrome.”
I knew this was bad. A million times worse than I expected it to be. I wasn’t prepared at all. Read More →