“Edward had to have a double hip replacement in October and he’s only just getting back on his feet, but in general he is doing so well.
“He is learning to swim, he can float on his own, which is really hard for children with SMA because they don’t have natural buoyancy.
“This summer, he jumped off a boat into the sea and he went on a jet ski. He’s a very sweet, loveable little guy.”
Edward has just started school, where he has made lots of friends, and “does everything an ordinary five-year-old boy does”.
“We just didn’t think that was possible. We didn’t know what quality of life he would have,” she said.
Various doctors and medical professionals visited him whenever he was in hospital, even when they were not treating him, because they were amazed by his progress, she added.
“They want to see first-hand what gene therapy has done for him.”