From the very beginning of our MCADD journey and my subsequent quest to increase awareness of newborn screening and metabolic conditions through this blog and elsewhere, I've been very careful to keep our son's name private. He didn't ask for this and he's too young to tell us that he wants to be an advocate for it. For all we know, he might want to live his life with a metabolic condition quietly and out of the spotlight, so who am I to make him a poster child without his permission.
A recent blog post from a fellow Consumer Task Force on Newborn Screening Mom renewed my commitment to privacy for our son. Amanda's son is older than our LB and her experience gives me a preview of what young adulthood may be like for our son if every detail of his medical odyssey is chronicled for everyone in his school or soccer team or scout troop to Google. Like Amanda, I hope to continue to share relevant general information about MCADD on this site, but my son will remain out of the spotlight until such time as he can make that choice on his own.
I encourage you to read Amanda's incredible post about her poster child growing up. She is a beautiful person who is deeply thoughtful and generous, not to mention an incredible writer.
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