Tough Choices: a DMD Parent Update

We have some tough decisions to make. Jack's infusions of Exondys 51, are getting more difficult each week. This isn't easy for us, but especially for Jack. Does Jack need a port? And Mason? Well it's been advised, from all the research we've done, and all we learned at the PPMD conference (as well as other families)- we need to change his steroid (prednisone) dosing. This means weaning him down during the week. And this is not something we can take lightly. This is the life of a DMD Family. Disclaimer: This is not medical advice. We are just a normal family, with extraordinary kids, just like you. Please consult with your doctors before making any significant medical decisions. Most importantly- do your own research. 📝Thank you for your comments! We read and reply to all of them! ✅Follow us on YouTube & Instagram    / @bafusfamily     / bafusfamily   #dmd #familyvlog #faith