She said getting the drug on the NHS had been “absolutely monumental” for Flory, and she believed her daughter was still walking, climbing and eating thanks to it.
“To know that she’s going to have access to this indefinitely… is everything,” she said.
“This treatment completely changes the trajectory of her life. Before, her entire life was uncertain.”
But while it is a massive relief for her family, she is determined to keep advocating for others.
Phoebe urged decision makers to do the right thing, adding they were “halfway there”.
“Every child should be able to access this treatment,” she said.
“It is is life-changing. To offer it some and not others seems brutally unfair.”