I know that I don't exactly qualify for the list, because I'm not the mother, but I have 2 nephews with MCAD deficiency, or
Medium-Chain Acyl-CoA Dehydrogenase Deficiency And know my fair share about it.
If it were a more common GD that other moms could share about, I wouldn't ask to be on the list, but because it's rare I would like to be on the front page for anyone with questions about it. MCADD seems really scary, but it doesn't need to be.
ETA: I see that you were asking for names, so I can follow rules My name is Heather, my nephews are Chandler and Cole.
Hi. I posted on the GDS thread too. My name is Laurie and my son Davin has Williams Syndrome (WS); also referred to as Williams-Beuren Syndrome (a rare non-hereditary genetic syndrome). Can you please add me as well?! Thanks in advance.
my 3 yr old has HLHS...heart defect..... if he counts... Jeremiah
and my 6 month old Lawson has a breathing problem dysphagia and trocolitis i believe thats how you spell it..his neck and head is messed up and its been that way since he was born