What I wish I knew prior to my son’s diagnosis of Primary Immunodeficiency

Having a primary immunodeficiency is not the only diagnosis he may ever have, but it can be the root of all of the other diagnoses.  Adrenal Insufficiency, Crohn’s or IBD, Psoriasis, Rheumatoid Arthritis, brittle bones, chronic dental issues, hearing loss, high cholesterol, liver issues, heart issues, there are many additional illnesses that go hand in …

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Holiday wishes we’ve had as a family with a child who has a rare chronic life-threatening illness.

Having spent three of the past six years in the hospital during the holiday season, these are some of the wishes we have as a family with a child who has a rare, chronic and life-threatening illness: 1. For everyone to be able to sleep under the same roof during the holidays.   It sounds silly, …

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When My 5-Year-Old Asks If One Day He Won’t Need the Hospital

As a mom to a chronically ill child with a life-threatening illness I get a lot of comments from people who feel sorry, or say they don't understand how I do it.  I can't even count how many times I've heard, "you poor thing".  Well, I don't consider myself poor and I certainly don't feel …

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