Lucy said Elliott's condition was diagnosed early, adding: "It was passed down by both me and his dad. We had no clue that we were even carriers.
"He cannot break down the sulphur in his body and it accumulates in his brain and causes issues. He was diagnosed at three days old.
"For the future, we don't know. We will never be able to answer that until we actually get there."
Charity Metabolic Support UK, external said: "Only three children in the UK currently live with MoCD-A, a severe, and often fatal genetic disorder.
"Current care focuses only on managing symptoms, with most children dying by age four.
"A targeted treatment, Fosdenopterin (Nulibry), exists but isn't available in England, as the company sadly decided to withdraw their application."
Jason Suckley, chief executive of Make-a-Wish UK, said: "Elliott played a starring role in his perfect day, essentially.
"An 'emergency' occurred on site at the fire station in their training facility, and he was on hand to point the hose there.
"Every wish has its moments where you can just see the power of it, and that was it.
"He was absolutely beaming as he got the chance to do that."
Additional reporting by Ian Skye and Becky Measures
red_rob5 on October 8th, 2025 at 16:05 UTC »
If not obvious from the context in the title, the charity in question being Make A Wish. Support your local chapter!