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Rett syndrome is a genetic neurological disease that Emily was diagnosed with just before she was 2 means that her body she doesnt do what she wants it to do or what it should do so basically her body doesnt work - I cant see you tonight be good life isnt easy for 6 year old Emily Higgins but there are bright spots and theyre heading to one the camp emily is going to is nearly an hour away oh my gosh Emily you are gonna have such a good day but its a lifeline yeah now more than ever even the first day I dropped Emily off and I I said to my husband like I just feel like I can breathe now cuz it was just it was really hard so yeah so its better now because shes happy it wasnt an easy decision Emilys condition means she has trouble fighting infection but it was a trade-off between managing the risk and the emotional toll staying home had already taken she was missing her friends and through this she was also diagnosed with dystonia which is basically really painful muscle spasm