Meet Drew Christine Potenti, the newest addition to our family, little sister to Dominic, half-sister to McKenzie and beautiful daughter to Will and April.  Like every other family with a new addition on the way, we all anxiously awaited the day of her happy arrival into our fold.  With an uneventful pregnancy, and a successful labor and delivery of big brother Dominic only 2 years before, we expected a healthy, bouncing baby girl in our arms on the day of the C-Section, July 13th.

Unfortunately, expectations do not always come to reality.  Drew was delivered at full term at a healthy weight of 6lbs 3oz with no complications during the delivery.  Despite this, it was immediately apparent that something was wrong.  Drew's muscle tone was very weak and she had little to no movement at birth.  Because of this there were problems with her being able to breathe and handle secretions in her throat that a healthy baby would easily be able to swallow down.  We all spent a few scary days not knowing what would become of this sweet little baby that we all already loved so much.

As the weeks passed and numerous genetic tests were done on Drew we kept hoping that each day as we walked into the hospital to be with her there would be some news as to what was wrong.  That day has still not come and a diagnosis is still unavailable.  All we know is that she still has very low muscle tone and that she is beautiful and that we want to bring her home. (We got the results back on October 26th that showed Drew has severe Nemaline Myopathy, a very rare genetic disease)

Bringing Drew home is another obstacle that needs to be hurdled.  Drew will be needing specialized care with eventual handicapped access to her home and bedroom.  Our goal is to be able to finish off the enclosed porch on the first floor of Drew's home and equip it with the necessary medical  devices that will be needed in Drew's care.  With April busy at Drew's bedside and caring for big brother Dominic, she has been unable to go back to work as originally planned.  Will has been working overtime and sacrificing time he could be with his family in order to keep the family financially afloat.  There is simply no budget for a new room for Drew or her continued care.

This is where we all come in.  We all want to help, to do something in a situation that makes us feel so helpless.  Please check out the pages concerning the benefit for Drew and the generous items that have been donated for raffles and an auction.  Tell your friends and family, pass the word.  Drew, April, Will and Dominic need your support.  I have now learned first hand that this is something that can happen to any family and most likely when you least expect it.  Continue to keep Drew in your prayers. Your thoughts and good wishes help in more ways than you know.

-Andrea Moore
September 1, 2007
devoted auntie to Drew 

For information on Nemaline Myopathy go to:
www.nemaline.org
www.buildingstrength.org