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Baby with one-in-a-million rare condition saved thanks to big sister s donation

Jakob Frost was just six months old when he was diagnosed with Mirage Syndrome and the baby had just a 30% chance of survival

Parent Caregivers of Highly Vulnerable Kids Want Vaccine Now

The Dance Centre will showcase online performances in the lead up to International Dance Day on April 29. But the family hasn’t made the six-hour trip from Penticton to Vancouver in more than a year. Charlotte’s parents feel travel and finding somewhere to stay creates too much COVID-19 exposure risk for their child, let alone the risks in the hospital. Five-year-old Charlotte is one of two people in B.C. with Mirage Syndrome, a rare genetic condition affecting her blood and immune system. She is immunocompromised and uses a ventilator for her central hypoventilation and chronic lung diseases and a feeding tube.

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