This is such a journey! I just found this post on facebook from nine months ago. It was from Ayrie’s last surgery in Chicago, just before we moved to Minneapolis. It’s hard to believe all we’ve gone through in the last nine months both generally and health related. I actually took a stress quiz [...]
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Okay, this post does not have much directly to do with rare pediatric diseases but it has a lot to do with what interests me… getting real people to make small changes that significantly support people’s health related needs! An undergraduate student at Harvard observed at hospitals and realized that often there was nothing the doctor [...] SOLVE is a great set of steps listed by the Children’s R.A.R.E. Disease Network (click here) designed to help you organize you to help you take action on behalf of your child. Some of the steps I did naturally, such as researching. But it was our first surgeon who told me to keep a detailed [...] |
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