ニューヨーク・タイムズのインスタグラム(nytimes) - 9月8日 22時09分

Hannah Peters, 23, with her 16-month-old son Jude before an annual balloon release at a conference for families of children with rhizomelic chondrodysplasia punctata, or RCDP. The disease — which is thought to affect fewer than 100 children worldwide, making it one of the rarest of rare diseases — is a painful form of dwarfism, usually accompanied by severe intellectual disability and respiratory problems. There is no cure, and children rarely survive into adolescence. But at this year’s conference, in Alabama, a biotech executive from Canada discussed a potential treatment being developed by his company and the possibility that the children could be part of a clinical trial next year. “You don’t want to get your hopes up because — what if? What if it doesn’t happen? What if it doesn’t work out?” @hannahkatelyn said. “But it was the only bit of hope that we had received since Jude was born.” Photo by @ilanapl. #hopeforRCDP

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