Eight year old Louella is one of the rarest children in the world, living with a progressive, ultra-rare skeletal condition that has no known match. As her mobility declines, her family faces the heartbreaking reality that their current home can no longer meet her needs. In this emotional interview, we speak with her parent about the challenges they face, the urgent need for an accessible home, and how the community can help support Louella’s journey toward independence, safety, and dignity.

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