For nearly a decade, Declan's life was measured in breaths, alarms, lab results, and the quiet, ordinary moments in between.  He taught us what love looks like when it shows up at 1am, when it asks the hard questions, and when it finally has to let go.  While he was on hospice for respiratory failure partially due to him fighting his interventions, Declan ultimately passed from a mucus plug that could have taken him with or without a trach. 

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This website exists because I refuse to let his story end with his death.  

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Declan was a fighter.  He changed laws.  He changed how doctors, nurses, prosecutors, schools and families think about fragile children and their duty to protect them.  He taught us to slow down, to appreciate our differences, and to find humor and light between the struggles.  

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Declan deserves to be honored.  To be remembered.  I can think of no better way to do that than to tell his story.  To help parents, clinicians, and advocates know that they are not alone, and to shine a light on this world.  

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If you are here as a parent, a medical professional, a student, a policymaker, or simply someone trying to understand such a powerful story, welcome.  Declan changed us.  I hope, in some small way, he changes you.