One thing we really noticed was that after the diagnosis, the number of appointemtns we were suddenly required to attend increased exponentially. Before the diagnosis, Dominic presented as a generally healthy child and we only took him to the doctors when he needed to go. Upon discovering he has DMD, we were faced with the reality that he was now required to attend a large number of various specialist and health appointments over a calendar year.
The number of appointments he needs to attend vary, depending on what is going on, but currently, there's about 7 annual appointments he need with specialists, plas weekly and fortnightly support from physio's and other therapists. These don''t include the support he gets from his school as well.
As the condition worsens, we'll likely need to double the number of appointments as he'll need to attend twice a year, rather than the current once a year.
I'm so grateful, however, for the professionals who are getting around him and supporting his needs. No doubt, without them, quality of life would be much less than it is. It makes me wonder how people who live in less ofrtunate countries manage this condition, and makes me want to raise awareness of it all the more.
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