Welcome To Harley's Playground

On 3-1-01, Harley Cheyanne Poore was born weighing 5 lbs. 9 ounces and 5 weeks premature. She was about 20 minutes old and was flown from Christina Hospital to A.I. DuPont Hospital for Children for Heart Surgery. She was diagnosed with Velo-Cardio-Facial-Syndrome or DiGeorge Syndrome (The 22q11 Group) resulting from a deletion within the 22nd chromosome. This disease was only recently discovered. One in every 2000 - 4000 babies is born with it each year. It is also known as VCFS or Shprinztner Syndrome. She has a paralyzed left vocal cord and suffers from failure to grow. A week after Harley's birth A.I. DuPont Hospital inserted a G-Tube for feeding. Two weeks after Harley's birth they discovered she had no soft palate. She was also diagnosed with Von Willbrand Disease.

Please be sure to check out the photo album to see pictures of Harley and please be sure to sign her guestbook.

You can also visit Harleys second site at www.kidsneedprayer.net/harley.html You can also visit a very Special Site www.lightingchildrenslives.org If you have any questions feel free to ask...e-mail me, Dorsey (Harleys Dad) at The_Game_19943@yahoo.com

Journal

Monday, January 5, 2004 10:04 PM CST

Hope everyone had a Nice and Safe New Year.Harley has had a sever ear infection.In 4 weeks she has been either A.I duPont Hospital for Children or the Dr.s Office.We can not get the reddess away from around Harley's G-Tube.It's like its raw.


For the most part Harley is still Harley (an Angel).She had a very nice Christmas.Santa Claus was very good to her.She was not worried about the gifts she love the wrapping paper.

The Dr.s is watching her ears for the infection.If they can not control it, they may have to operate on her ears again.

Look at past journal entries

Hospital Information:

A.I.DuPont Hospital for Chidren
1600 Rockland Rd.
Wilmington, De. 19903
302-651-4000

Email address  : The_Game_19943@yahoo.com

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.