Barb and John
Parents of Jake (18 at the time of this interview) who has Dravet syndrome and Secondary Mitochondrial Dysfunction, and older son Ryan.
Don’t try to fix it. You don’t have to do it all in one day.
Parents of a very medically complex son with life-limiting conditions (now 18) share that ‘it’ happens in phases and parents grow into each phase. It is a gradual progression. Take it one day at a time. Try not to think about the “What if’s.” Try not to plan.
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Don’t try to fix it. You don’t have to do it all in one day.
It was a big disconnect.
He has taken over the entire home.
You evolve into all these things.
