PostedJune 25, 2021 · 2 minute read
Content curated with the rare disease community in mind.
Writer Julie Kim takes the art of recommending to a whole new level with this Wirecutter list of toys for kids with — and without — complex needs. Kim’s picks include a bright rattle (first introduced by her daughter’s occupational therapist), a luxe bubble machine and an alluring sensory swing. “The more I research items for children with ‘special’ needs,” she writes, “the more convinced I become about the universality of the human condition.
World Sickle Cell Day was June 19. This profile chronicles one woman’s struggle to find doctors who will listen and manage her pain, and her increasing desire to find support for others living with sickle cell disease. “It’s just my life,” she concludes. “The one I’ve been dealt.”
We simply cannot wait to read This Boy We Made by Taylor Harris (January 4, 2022). In the publisher’s words: “A Black mother bumps up against the limits of everything she thought she believed — about science and medicine, about motherhood, and about her faith — in search of the truth about her son.” Pre-orders are available now, and in the meantime, check out a list of Harris’s writing here.
Becoming a parent gave Chloé Cooper Jones a new desire to educate others about what it’s like to be disabled. But it was Cooper Jones’s young son who made her realize that, to him, her “disability was little more than a notable, if ultimately uninteresting, fact among many.”