Tuesday, August 25, 2009

So we FINALLY got news..and good news at that. We found out that some of the donors have responded and we should hopefully be finding out something at Kyler's next appointment (which will be next monday.) YAY!! =) Okay I know I am probably going to sound paranoid but I am sooo worried about this whole swine flu thing. So many children around my area have had it and 20 people had to check out of a school nearby with it. I am sooooo afraid of him catching it so I have personally put him and me on house arrest. The only thing is, though, that my husband still has to work so he will still be out there around all of this. But hopefully by Kyler and me not going anywhere that will help cut down on his chances of getting it. I am really worried about it though. Everyone PLEASE pray that he doesnt!!


  1. Just make sure your husband washes or sanitizes his hands as soon as he comes in the door, before he touches Kyler. That really is the number 1 way viruses and other germs are spread.

  2. Hi Jill,

    My name is Rosalind and I have an almost 18 year old boy with WAS who has never had a BMT and is exceptionally healthy and living a very very normal life.

    There is much to know about WAS before going to BMT. For instance, approximately 1/2 of the kids with WAS mutations present with a very mild form of WAS called XLT and their symptoms include low platelets and possibly excema and the vast majority of them live into their 70's. Has your son been tested to identify the WAS mutation? This is a very important test that will help determine Kyler's likely course with WAS. Also, there is another really important test that determines if the child makes WASP Protein. IF he does this also is a very positive sign of an easy mild case of WAS.

    I understand your desire to fix Kyler's WAS by way of BMT but you should know that it is wrought with risk and can be a very traumatic experience. If needed, BMT can be a miracle. If not needed, it can leave a child with worse symptoms than he had prior to it.

    Please know that there are many families who are in the same shoes and who will support you unconditionally. You can find many of us by logging onto www.primaryimmune.org (the website for the Immune Difficiency Foundation) and going to the WAS forum. Also, there is a group of doctors at the National Institutes of Health who have followed boys/men with WAS for over 30 years and as such have vast amounts of knowledge based upon huge numbers of patients that can and is very helpful to families like ours. Dr. Candotti is the head of the department and he is a lovely man. He is always available to WAS families and he has been instrumental in guiding our family. Please consider contacting him at 301-435-2944. He is amazing!!

    Please feel free to email me at rkcardia@aol.com if you want more info or just some support.