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Again, this is copied from a fantastic resources provided by the University of Minnesota’s Health Systems. If you are a parent, reading this list might reassure you that you are already making good choices! For friends, you might get ideas for areas where you can offer a family support. Stay involved and give information Discuss with your [...] When I knew I was expecting my first child, I quickly bought books about racing multi-race children. I wanted to be prepared for the ups and downs, to know what to expect as my child grows up and has to navigate a world where his complexion will become an important factor in his self-identity. But [...] “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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