Thursday, May 8, 2008
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About Me
- Jessie
Mail: Jessie Hall
c/o The Hemispherectomy Foundation
P.O.Box 1239
Aledo, TX 76008
Jessie is 8 years-old and in 2nd Grade. She has 3 brothers, Matt(12), Jake(10) and Josh(10). She loves people, and never met a stranger. She loves to laugh and sing and play. Jessie was diagnosed with Rasmussen's Encephalitis(RE), which is a rare brain disease that usually attacks healthy children about her age. The only known treatment for this cruel disease is a hemispherectomy (surgical removal of one-half of the brain) This is an account of Jessie's confrontation with RE and her families attempts to navigate through a new world to bring her the best care possible. Surgery was on June 11, 2008. This Blog is an attempt to help people undertand this disease and surgery, and to help others with kids going through it to find comfort and resource from someone who has been there before. Read from bottom, up. It will be updated continuously through Jessie's Miraculous Recovery.
**To add Comments, just click "Comments".Or, email Jessie at Jessie@Hallzoo.com.
2 comments:
Good Morning from rainy Northeast Maryland! My name is Tammy and I am a past patient of JHH and Kennedy Krieger of many, many years. I was born with spinal diastomatomyelia (a very small pinhole opening in spine, not noticed until I was over one year of age) 44 years ago and had surgery performed at JHH. I had the subsequent loss of use of my left leg and I use crutches to walk. I spent many years at the March of Dimes Clinic at KK which was headed by Dr. John Freeman (pediatric neurologist) and Diana Pillas. I just spoke to Diana a couple of weeks ago to "catch up" a bit. I am the married/employed at home (medical editor) mom of a 20-year-old daughter (Heidi) and have been following Jessie's blog for a couple of months now. Not sure how I happened upon it but am sure glad that I did. Jessie is in our prayers. I know first hand that she will be receiving the best care possible at JHH and I look for her to make a full and total recovery. AMEN! I remember watching Dr. Freeman years ago on the Phil Donahue show and the children that had the hemispherectomy performed were also there with him. It was amazing. Prayers are with Jessie and all of you for an amazing recovery, rehab and future. Hugs!
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