Wake Forest, North Carolina (NC) - partial Trisomy 13

My name is Cynthia Toomey, my daughter's name is Eleora Toomey, she was Born Aug. 27 2002, She has a partial Trisomy 13 w/ partial Deletion of 9.

Update: 9-19-05
Aug 27th 2005Eleora turned 3 years old and on Sept. 8th she started school. So far she loves it but is completely exhausted.
Live Well, Love Much, Laugh Often!

July 2005:
Eleora is amazing - she is getting stronger every day and more alert she is starting to watch things a lot more and follow object even fast moving ones.  We have started a new medication called Carnotine which is supposed to help give the muscles energy and it seems to be really helping.  Her therapists have noticed a difference every visit.  We along with her audiologist have decided to try not putting her hearing aids on for 3 months and have found she is a lot more verbal, not words yet other then hey and uh huh but we are hopeful.

Our family web page is www.toomeyfamily.net and has videos and more photos of Eleora
http://www.toomeyfamily.net/ppt13_pd9.htm
http://groups.msn.com/Trisomy13Support/shoebox.msnw