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“My friend’s child was just diagnosed with a rare disease. What do I say?” “My sister has been struggling to take care of herself and her family through her son’s illness over the past two years. What else can I do to show her that I am here for her?” “My cousin just lost her daughter to a rare [...] For those of you who are new to this website, my son has JORRP, which you can read about here, and you can read more about his story here. Ayrie’s breathing is deteriorating. I don’t know if it’s regrowth of the papillomas blocking his airway or a side-effect of the medicine he takes. I don’t want [...] Okay, I know. With medical bills and other health related expenses, it’s hard to think about taking a vacation! But if possible, it’s also wonderful to relax together as a family, in an environment that takes the focus off of the illness or disease and puts the focus on enjoying the moment. [...] |
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