Harry Beale, who lives with his family near Watton, has been diagnosed with an ornithine transcarbamylase deficiency.
The condition stops the body from breaking down protein and heightens ammonia levels.
Harry's mother first spoke out to raise awareness in 2023 (Image: Sarah Beale)
Most boys with it are "lucky to survive 48 hours after birth".
Harry must take 36 medicines a day and eat a very strict low-protein diet to manage his symptoms........