Family life child parents

To the Parent of Child With a Rare Disorder Who Just Joined Our Support Group

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Dear parent whose child is newly diagnosed with a rare disorder, I have debated what to say to you or your family member as you join our support page, because the reality is that you are currently seeking something to keep you continue breathing as you are embarking on this journey.

You are wanting a lifeline, you are wanting something tangible, something to actually grab a hold of — you are simply wanting some hope.

That is fair, we all do when we start on this journey. We search into the depths of every orifice as the journey begins to unfold and we struggle to regain our grounding as life slowly begins to move forward.

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