About

Welcome. I am a former finance leader whose career shifted when my son Declan’s complex medical needs required full-time care and advocacy. Declan was born with Moebius Syndrome, an extremely rare neurological condition that causes paralysis of the facial muscles due to underdeveloped or missing cranial nerves, specifically nerves VI and VII. Along with facial paralysis, Moebius often causes low muscle tone throughout the body, which can affect every bodily system. Declan was on the severe end of the spectrum and could not eat or breathe on his own.

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While Declan fought for his life, a nurse who was supposed to help keep him safe broke that sacred covenant of trust and instead tortured him in our home. Because of a massive gap in Minnesota state law, this nurse nearly walked free and ultimately served only one year in prison. At the time, “torture” was not clearly defined as a specific crime against children. I became a fierce advocate and fought for a new law, ultimately helping pass Minnesota Statute 609.3775—what I like to call Declan’s Law. Because of this law, there are now multiple monsters behind bars who would otherwise have walked away without facing justice.

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Throughout Declan’s life, we climbed constant uphill battles. We navigated Medicaid and disability waivers. We fought with insurance. We faced nursing shortages. We met the best and the worst of humanity. We fought school districts and hospital bureaucracies. We fought for Declan.

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Declan’s life was full of adrenaline-filled, almost cinematic near-death experiences. It was also filled with love. Declan deserves to be remembered. His story is important. This world is a better place because he was in it. And I’ll keep speaking for kids like him. He would want me to.