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Going to the NIH Hello! I am taking my son, Trevin, to the NIH in 1 week and am wondering if anyone has any input on things that can make our trip go as easily as possible. We are going to be staying at the Childrens Inn and seeing Dr. King and Dr. Malik for a "meet and greet" consultaion. My main goals in making this trip are to learn as much as possible about where they are with gene therapy vs. stem cell transplants. Let me know if you have any input. I want to make the most of this trip! Thank you, Brandy
Submitted by Trevs Mom on Sat, 2007-04-14 09:40. categories [ General Discussion ]
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 My nephew is at the NIH as we speak. He had the stem cell transplant two months ago and is not doing too well. He is in ICU and my sister Melody is staying at the inn. Melody has lived with this for 32 years and lost a son when he was 5 months. Look her up when you are there, she can answer all your questions. I hope that your nephew is doing better. I'm sure it's been very rough. I just pray that there will be a cure for CGD. I have two sons with CGD, ages 26 & 30. Will be at NIH this Monday - Thursday. Erik is going to have surgery on his gums. Please let us know how your nephew is doing. We care. Mary Hurley |
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I'm glad that you had a good trip to NIH and that Trevin is doing well. They are great and I'm sure you'll benefit from your visits.
Did you learn anything new about gene therapy or stem cell transplants? I'm going to the IDF Conference and both Drs. Malech and Holland will be speaking to CGD families. I'll post after the conference.
I read all your postings on Caring Bridge www.caringbridge.com/visit/trevin and saw Trevin's photo album. Such a cute little boy! I'm sure he's very excited about the arrival of his little sister. Take care.
Mary Hurley