{"id":53464,"date":"2020-07-07T13:21:14","date_gmt":"2020-07-07T13:21:14","guid":{"rendered":"https:\/\/virusreports.net\/it-will-consume-your-life-4-families-take-on-rare-diseases\/"},"modified":"2020-07-07T13:21:14","modified_gmt":"2020-07-07T13:21:14","slug":"it-will-consume-your-life-4-families-take-on-rare-diseases","status":"publish","type":"post","link":"https:\/\/virusreports.net\/it-will-consume-your-life-4-families-take-on-rare-diseases\/","title":{"rendered":"\u2018It Will Consume Your Life\u2019: 4 Families Take On Rare Diseases"},"content":{"rendered":"
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Monica Coenraads had a terrible feeling something was wrong with her 14-month-old baby, Chelsea. She had not learned to walk. She had one word, duck, and then lost it.<\/p>\n

During a family vacation to Barbados more than 20 years ago, Chelsea cried the whole time. She bit her parents so hard they bled. She was only happy in the hotel room with the shades drawn.<\/p>\n

\u201cI got home and said, \u2018That\u2019s it. We have to figure out what is wrong.\u2019\u201d<\/p>\n

What happened upended Ms. Coenraads\u2019s life.<\/p>\n

Chelsea, it turned out, had a rare genetic disease, Rett Syndrome. It\u2019s one of about 7,000 rare or orphan diseases \u2014 defined in the U.S. as an illness that affects fewer than 200,000 people<\/a> nationwide \u2014 with more such diseases being identified every day. Ninety-five percent of them have no known therapies. They are overlooked by most scientists, and some illnesses may be untreatable, even if they are understood. And what research there was has largely been halted as labs closed in response to coronavirus fears.<\/p>\n<\/div>\n<\/div>\n

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Ms. Coenraads, 57, who lives in Trumbull, Conn., has encouraged research into Rett Syndrome where there had been none, providing hope for her daughter and the small number of people who live with the disease, and showing one way that a determined person can succeed against such odds.<\/p>\n

When frantic parents of children with other rare disorders ask how she did it and what they can do, Ms. Coenraads recognizes the fear in their voices.<\/p>\n

\u201cWe have no choice,\u201d she said. \u201cWe are desperate parents. We have children with horrible diseases.\u201d<\/p>\n

She talks to every parent who calls, but, she said, \u201cI always get off the phone thinking, \u2018You don\u2019t know what you\u2019re up against. It is daunting, and it will consume your life.\u2019\u201d<\/p>\n

What follows are the stories of Ms. Coenraads and three people who have succeeded in promoting research on uncommon diseases, but in very different ways.<\/p>\n<\/div>\n<\/div>\n

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\u201cWe have no choice,\u201d Ms. Coenraads said, pictured with Chelsea. \u201cWe are desperate parents. We have children with horrible diseases.\u201d <\/span>Credit…<\/span>Monica Jorge for The New York Times<\/span><\/span><\/figcaption><\/figure>\n<\/div>\n<\/div>\n
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Photos of Chelsea as a baby undergoing testing. Rett Syndrome destroys a child\u2019s abilities to walk, talk, eat and even breathe easily.<\/span>Credit…<\/span>Monica Jorge for The New York Times<\/span><\/span><\/figcaption><\/figure>\n
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Materials for the Rett Syndrome Research Trust that Ms. Coenraads founded to help find treatments for her daughter.<\/span>Credit…<\/span>Monica Jorge for The New York Times<\/span><\/span><\/figcaption><\/figure>\n<\/div>\n
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