http://blog.cure4keith.org/ en Copyright 2008 Sun, 17 Feb 2008 18:19:04 +0000 http://www.sixapart.com/movabletype/ http://blogs.law.harvard.edu/tech/rss GREAT, GREAT ,GREAT NEWS! Keith loves food. Keith has never liked food. He has been on the same formula since he was a baby. He always has drunk his milk out of a bottle. I was so worried about how I would get him off the bottle before school started. Then one great day I gave Keith his formula in a cup and he thought it was disgusting. He put up a fight but after three days he was off the bottle. Keith is a very strong minded little boy. Every time we tried to give him something to eat he has had a problem with it. We can't blame him because all of the allergic reactions to food that he has had. He remembers them all and so he is often scared to try things. But now those days are coming to an end. The boy is eating us out of house and home and we are so happy and excited. Thank you God ]]> http://blog.cure4keith.org/2008/02/i_love_food.html http://blog.cure4keith.org/2008/02/i_love_food.html Sun, 17 Feb 2008 18:19:04 +0000 I haven’t wrote in a while so I should let you all know the baby has arrived. A little girl was born to us February 28th. Her name is Keira Denise Jones. She has been tested and she is a 100% match for Keith. He can have his transplant now. The truth is he has been doing so well I didn’t think this day would come. I kept putting the thought of a transplant to the back of my head. Since Keith has been out of trouble the last year the doctors recommend that I didn’t do a transplant unless we had a 100% match. So when Keira was born I had to face this ugly truth. This disorder is never going to go away my baby will be dealing with it for the rest of his life and we as a family will never have a normal life. We are at the NIH now. We have been coming every month for 6 months. Today I checked to see how Little Jack was doing and I saw that he has passed. This disorder has affected us all and our precious sons have suffered more than anyone can imagine. As a mother and a friend I am heart broken about this news about Jack as I’m sure we all are. I’m scared. I’m scared to say yes to a transplant that may or may not save my baby. I’m scared to wait to long. I’m scared I wont be strong enough for him. For the mothers that have made that decision I am reaching out to you. I need to know how did you make the decisions. I need advice from those of you that have chose to go on with this. I will be praying tonight for guidance and strength for all of us. Thank You http://blog.cure4keith.org/2007/04/i_havent_wrote_in_a.html http://blog.cure4keith.org/2007/04/i_havent_wrote_in_a.html Thu, 19 Apr 2007 03:10:36 +0000 ]]> http://blog.cure4keith.org/2006/12/happy_birthday_little_keith.html http://blog.cure4keith.org/2006/12/happy_birthday_little_keith.html Mon, 04 Dec 2006 16:59:14 +0000 N.F.E.D. and Andy's dad Andres Trevino. He is responsible for setting up this website. We have set this site up for Keith with the hope that we will be able to raise funds, awareness, and support for this rare disorder that our son lives with. When we first found out about this ectodermal dysplasia (ED) with a primary immune deficiency there was only one family on the internet going through what we were going through, Andy’s family. Now there is a network of families that can share support through the good and bad times. We appreciate all of the love and support that are family has given us and ask that you continue to keep our baby boy in you prayers. ]]> http://blog.cure4keith.org/2006/11/little_keiths_background.html http://blog.cure4keith.org/2006/11/little_keiths_background.html Fri, 24 Nov 2006 22:50:31 +0000 http://blog.cure4keith.org/2006/10/guestbook.html http://blog.cure4keith.org/2006/10/guestbook.html Fri, 27 Oct 2006 16:41:46 +0000