Lisa Littleton, who is the mother of two sons with Duchenne, one passed and one living, is a full-time caregiver. She shares her perspective on the mental health challenges that can come with Duchenne, emphasizing the importance of comprehensive care for patients and families.
Transcript
Yeah, I mean honestly, one thing I wish I knew as a parent again, I’ve always said this about the Duchenne community: We have great care centers, but we are really lacking in that mental health piece.
And I really wish I would have had more help with that, especially, you know, with hormones in middle school and so overwhelming. What’s really so hard is, you know, everybody else is getting more independent and you’re getting less independent. And that’s — that’s not always easy.
I wish that I would have had a little bit more help and information on how to kind of navigate that with him. I think that would have been huge, because so much to figure out on your own. And honestly, that mental health piece, I think is what’s really missing.
We’ve found some help for Andrew on our own, but I would love to see that more in comprehensive care. So he did, you know, see a therapist. And that was really helpful. And then he decided, “I’m done.”
OK. If you feel like you’re done, that’s fine. Like, did I think he was done? No, not really, but he was done. And I was like, “You know what? This is your choice.”
So as much autonomy as you can give, you know, because there’s only so many things that he could have controlled. And that’s annoying, you know? So try to give the person as much control as they can have because it’s frustrating not to have that.
