Sophie's Rare Journey with AVN

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Sophie's Rare Journey with AVN Sophie was the 2012 Regional Telethon Little Star. Follow her journey, suffering with a rare disease diagnosis - Avascular Necrosis.

Sophie was diagnosed withJIA (Juvenille Arthritis) at 1yo. Unfortunately, despite a variety of treatments, we have not been able to control her arthritis. Several years after her JIA diagnosis, following a slight fall, it was discovered that the bones in Sophie's left ankle were crumbling and she was diagnosed with AVN (Avascular Necrosis)
This rare medical condition is caused due to the interruption of blood flow to her bones. This has since been discovered in her right ankle too. Unfortunately AVN is a rare diagnosis and therefore there are no known treatments. Therefore the focus is preventing further damage rather than repairing the damage that has already occured. Sophie has to endure many painful procedures, injections & infusions, daily medications, frequent MRI's and has limited mobility. Sophie was the regional 2012 Telethon Little Star with Conor Brown (you can follow Conor Journey on Facebook too: Conor's Challenges - A Rare Journey)

When I was 7 years old I was selected to be the 2012 Regional Telethon Child.This is where I had the pleasure of meeting...
06/11/2022

When I was 7 years old I was selected to be the 2012 Regional Telethon Child.
This is where I had the pleasure of meeting Conor Brown.
And I was mesmerised. He was cool. He was funny. He was a whole year older than me. And he took injections like a champ (a skill I didn’t master until I was 12).
Beyond that he was so incredibly kind to me. He was one of the first people I’d ever met that I could relate to. Growing up as a disabled child is lonely but I didn’t feel alone when I was with him.
Life happened and we haven’t spoken I years but I never forgot the boy who taught me how to laugh at my illness.
I woke up today to the news he was gone. And I was reminded of how utterly unfair the world we live in is. But I am comforted by the fact that he is somewhere better, happier and without pain.
Rest peacefully Conor Brown.
❤️ Sophie Read

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