Wednesday, April 1, 2009

Jenna - Connecticut

I would like to introduce everyone to our newest friend Jenna.

She lives in Connecticut. Her mother, Lisa, has spoken with our other friend Vanessa a few times but this is my first meeting with her. Jenna was diagnosed with ROHHAD Syndrome at the age of 4 years old. Jenna is now 7 years old. Jenna has endured multiple seizures lasting at least 45 minutes each time. Jenna's last seizure has left her unable to speak. Jenna has a trach in place and is on the ventilator 24 hours a day 7 days a week. During brief times when Jenna is strong she is able to get off the ventilator and play for about an hour. I am told these are Jenna's favorite times.

Jenna - you are a beautiful little girl and I am so happy your mom contacted me and sent me the photos of you. I was looking at this photo with Haven's dad and guess what -- you both have the same bear from Build-A-Bear!

We love you.

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