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Lessons Learned from a Brain Injured Child

Lessons Learned from a Brain Injured Child

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Posted on September 5, 2017December 27, 2017

Talking about an Early Exit

The Follow-Up Visit So you receive news that your daughter has a rare disease. The first response is, I don’t believe you. Shock. Denial. The second is, what can I do right now to fix this? Nothing. Next you learn that it is going to be a few months before you can even get in … Continue reading Talking about an Early Exit

Posted on September 4, 2017November 2, 2017

Re-Evaluate Everything

The essential purpose of this post and this blog site is threefold:  To leverage the power of the interwebs to bring awareness to a broader audience about an extremely rare disease (ADSL) and hopefully provide an opportunity for connection to those in a similar situation; To provide a forum for our friends and family, who we … Continue reading Re-Evaluate Everything

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