Betty Vertin, who lives in Hastings, Nebraska, has three sons with Duchenne muscular dystrophy, the first diagnosed in 2010 at age 4 and the other boys within the following year. She shares how her family balances treatment routines with growing autonomy across three Duchenne diagnoses — and what’s made the biggest difference.
Transcript
I think it’s important to just have open communication between the caregiver and the patient — and in this case, my sons. They’re older now — 14, 16, and 19 — but from the time they were very young, they were always part of every conversation that we had.
They didn’t always, at a very young age, have an opportunity to give a lot of input because they weren’t old enough to understand, but as they got older, they had a voice in all of the decisions that we’ve made.
And so I think you can give them the autonomy by allowing them to be the decision-maker, and you just be the support as they get older and as it’s age-appropriate. But I think by the time they’re teenagers, it is age-appropriate to have them be a vocal member of the medical team.
