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 11-6-09

Eleora is doing great she is almost 50 lbs now.

Last year she started sitting up on her own she loves to spin around in circles while sitting up. Also she is blowing kisses. She also loves Music.

In Jan. she started having seizures and is on medication for them now, other than that things have been going well.

Eleora has just been approved for make a wish we will be going to Atlantis in the Bahamas in Jan. so she can swim with the dolphins.

Cynthia
Toomey@nc.rr.com

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Update 7-11-09

Eleora will be 7 years old next month 8/27/2009 she has learned to sit up on her own and had her g-tube taken out about a year ago. 

New years she started having seizures and has had to go on medication for them, but is doing really really well. 

We treasure every day with our beautiful girl.

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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