ニューヨーク・タイムズのインスタグラム(nytimes) - 6月24日 05時36分

“We always knew that something was wrong,” Michelle Lessner-Gonzales said about her son, Nicolas. “He wasn’t crawling on time. He wasn’t walking on time.” Nicolas, 14, has Duchenne #musculardystrophy, which overwhelmingly affects boys and causes their muscles to deteriorate, killing many of them by the end of their 20s. Last fall, though, the very first drug to treat the rare muscle disease was approved. The problem is it’s still unclear if Exondys 51 works. And because of its high cost — the drug can cost more than $1 million a year — many insurers are either declining to cover it or imposing severe restrictions that render patients ineligible. Meanwhile, parents insist that it’s working — or at the very least, that it can’t hurt to try. “To say it may not work is not good enough,” Michelle said. “I have to try for Nicolas. He deserves that shot. He deserves the chance.” She and Nicolas, photographed here by @mcheathamw, are currently waiting for the Illinois Medicaid program to decide whether it will cover Exondys 51. The decision should come by July 1. In the meantime, though, Nicolas is losing his ability to walk, a common prerequisite for coverage. “Every day it is imperative to slow down the progression,” Michelle told @ニューヨーク・タイムズ. “His window is closing, and these review processes, it’s just throwing time away.” Visit the link in our profile to read more.

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