Zach’s Story

Zach was diagnosed with developmental delay until age 18 when he was diagnosed with CHD2 myoclonic encephalopathy. The same year he was to enter the adult healthcare system. Zachary and family have experienced what it feels like to fall off the “healthcare transition cliff” without access to either healthcare or community supports he needs. He is now 23 and lives at home with his parents. Listen to Zach’s family story here: podcast episode 1

Olivia’s story

Olivia’s genetic condition means Olivia’s is truly a ONE in the world and facing a very uncertain future. Oliva’s has outgrown children’s palliative care. Entering a system that is designed for seniors does not meet Olivia’s needs for her quality of life. Listen to Olivia’s story here. podcast episode 2

Cai’s Story

Adopted at a young age, Cai has just turned 17 and is facing an unclear future. Cai’s family has just been informed that this is his last year of secondary school. Originally expected to graduate at 21.  Cai has complex needs including trauma/attachment issues, autism, and juvenile diabetes. Listen to Cai’s story here. podcast episode 3

Alyssa's Story

Alyssa’s Story Caring for someone with a rare disorder is a lonely life. Carl Weatherall, father of Alyssa, who experiences hundreds of epileptic seizures each day, explains the social isolation he and the rest of his family feel. In this interview, Carl shares the 20+ year journey in trying to get Alyssa the healthcare and social support she needs and deserves. Join the conversation on #ICareforRare podcast, advocating for reform in rare disease healthcare and community support.
podcast episode 4

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