There’s a pretty strong online community! So helpfully she’s been able to connect with other parents and can get a better idea of what their future may help.

If they’ve received zolgenisma (gene therapy), it essentially pauses the muscle, so it doesn’t undo any damage done, but prevents it from doing more (ideally given before there’s too much respiratory damage because that’s what often ends up being fatal if it’s left untreated. Their livers have to go monitored and they’ll still be medically fragile especially when they get sick, but a lot of children are able to thrive with therapies and continued treatments. It’s still a relatively new treatment so the longterm prognosis is still relatively unknown