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404) Shem and Lizzie Johnsons 
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Monday, March 7, 2005 03:51 PM Host: Write a comment

We too have a daughter with MCADD and have read yours and many others stories on this deadly silent disease. Our daughter was born on April 13,2004 in Cranbrook B.C. and we learned of her MCADD about 1 week after her birth.
A specialist from Vancouver B.C. called my husband and told him to bring our baby straight to Vancouver to do further testing! But we did not understand because she was a beautiful healthy baby. So my husband told her that we wanted a second screening taken first. It came back positive also and the specialist contacted our doctor in Bonners and he did lots of research on it with us. Since he too had never seen a child with this condition in all his practice so far. They told us the main thing we need to do is feed her every 3 hours and if she ever gets sick to bring her in right away so they can give her fluids if she won't eat.
She has got the flu a few times and pnemonia once but we were able to get her on antibiotics and get her well again every time. We have not had to hospitalize her yet. We are very grateful for that. We hope she can stay well and healthy. She is now 11 months old and a very happy baby she is crawling all over the place and almost ready to take off walking. We have read up on most of the stories on this internet about MCADD and our hearts go out to you and your precios Alexis and family. Thanks for all your help!
Love and Blessings,
Shem & Lizzie Johnson
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