アンナ・パキンさんのインスタグラム写真 - (アンナ・パキンInstagram)「Marky Juquez is an Epidermolysis Bullosa warrior. His elder brother Carlos passed from EB a few years back. And THIS (swipe left) is the indefensible CRUELTY and BULLYING he and his mother recently faced on @YouTube . She has lodged a complaint and NOTHING has been done about it. As a parent and a human this just breaks my heart. @youtube needs to do better but in the mean time let’s show @melissa_2010 and Marky some love and support. And if you feel moved to donate to Marky’s fund, there is a LINK IN BIO of @melissa_2010 . EB, is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB). There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. The list of complications and secondary illnesses can be long and requires multiple interventions from a range of medical specialists. EB affects all genders and racial and ethnic groups equally.」8月25日 6時12分