"The renal disease begins as proteinuria, progresses to
steroid-resistant nephropathy, and ultimately advances
to end-stage renal disease [4, 6]. FSGS is the predomin-
ant renal pathology and is refractory to treatment with
glucocorticoids, cyclosporine A, and cyclophosphamide
[4, 6]. Suggesting a cell autonomous mechanism for the
renal disease, renal transplantation is efficacious, and the
disease does not recur in the graft [2, 4, 5]." Morimoto et al. Orphanet Journal of Rare Diseases (2016)
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Marie Morimoto was one of our first research students in Canada who helped us with SIOD under the supervision of Dr. Neal Boerkoel. When we found out that Emily's kidneys were failing back in 2007 and the typical medicines were not even touching the progression of her FSGS (focal segmental glomerulosclerosis) we didn't know yet that Emily's battle was much larger than even this. As if a battle for transplant wasn't enough we would later come to find she had SIOD- this rare life limiting disease characterized with the very thing trying to take her life at the tender age of four.
I was not Emily's blood type, Joe was and his sister, Chris. They both did further testing, yet Joe kept saying it will be me. And it was. His big ol kidney- ( your adult kidney is the size of your fist) went into Emily's tiny frame in the front by a transplant team at UNMC - Dr. Brian Stevens and his wife, Lucy.
Joe saved Emily's life on May 6, 2008. Joe and I continue to be organ donor registered and strongly encourage you to talk with your families about organ donation. Living or Deceased. Be sure your family knows your wishes and put it in writing.
Here are some resources for more info:
