I had some fun doing an interview with Noah. Lets just say we are both not as natural or as comfortable as Jonah. There were many edits but we managed to pull it off. We hope you enjoy the update. Jonah is begging me to do another video with him so comment below what you would like us to talk about. We would love to include your questions. As always thanks for following us on this journey.
https://youtu.be/Egqv1p43Vmw
Thank you both for that helpful update, Melody and Noah!
ReplyDeleteHi my name is Julie and I came across your blog after searching google about muscular dystrophy. Small world, I have desmin myopathy. I've only found about 5 other people with this as well and you will make 6! I'm 29 and currently waiting approval for heart transplant. My symptoms didnt start until my early 20s and my heart failed at 23. I have difficulty swallowing but my lungs haven't been affected yet. Drop foot and leg muscle weakness but I can still walk short distances. Nice to meet you! Wishing you all good luck in the future!!
ReplyDeleteIf you want to find me- I have an instagram-
@julz2188
Lots of love!
Julie Mac!