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Have you ever heard of TUBA ONE A? I didn't until I found a family needing care for their wonderful little boy with this diagnosis. I spent two years caring for him full time, sometimes up to three days on my own. I assisted with respite, habitation and attendant care. Feeding, bathing, playing, sleeping, OT, PT. I learned how to do it all. I found it incredibly rewarding to have a bond with such a unique kid.