Emily and I had a very productive time while in California this past week. This had been in the works really for the past year. If ya'll recall the original lab in Canada shut down in Dec. of 2016, but Dr. Boerkoel put us in touch with Dr. Lewis from Stanford who was taking over what could be salvaged from the Canadian lab and working on really three primary things for the good of SIOD. 1. T- cell deficiency ( immune system, Haplo stem cell transplant prior to kidney transplant- if possible with a less invasive chemo regiment) 2. Vascular work for the issues with SIOD and 3. ultimately a drug protocol for all children diagnosed with SIOD.
Again- this is all research, and much more to it than I am posting here and in the beginning stages, but exciting none the less and great to be in on the ground floor! Along with this comes a hefty, yet doable, $30,000 a month to keep the lab open and $6 million to carry out the research for it to be a realization! We will address this more later and how ya'll can help prolong Emily's life and others! I took several pics of the docs there, the lab where DNA work is active and those working in the lab. Everyone was thoughtful, genuine and great to talk to while Emily and I were there.
So, as you have read 2018 has been interesting to say the least thus far. I haven't even touched on all the health care issues with Emily and other children with life limiting diseases that I have been working on with our government! Or what lies ahead this year!
Thank you for Believing in Emily and remember, Together We Can Do Something Extraordinary!
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