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My grandson was diagnosed with Duchenne MD at 2 years of age. He is now a 22 year old living with his  divorced mother ( his primary caregiver) in Wisconsin.
Recently, my concerns involve my grandson’s life as an adult with MD who has currently been taken off steroids. I understand he will be getting weaker, but I’m hopeful the lack of steroids will protect his body from future disintegration after lengthy use of the strong drug.
Because  I  live in Florida I cannot be physically present for my daughter or grandson, but I’m hopeful I can offer emotional support and helpful information  during this time. I felt this site might offer some valuable information regarding treatment and care for adults with Duchenne . (I’ve found very little information on this subject).
Thanks!