I kept searching...

I kept searching and reading and questioning what was happening over twelve years ago when our daughter, Emily first started presenting clinical signs of an unforeseen genetic diagnosis of SIOD.  Emily's kidneys were failing at a rapid pace despite typical drug protocol precautions and before we knew it she was getting a kidney transplant from her dad.  We thought- whew- okay now we can breath again- nope- she got PTLD (post transplant lymphoproliferative disorder- cancer) and it developed into Stage 3 Lymphoma.  Then as we thought she had it beat- not 3 months later it came back.  During this time I dove into everything I could get my hands on and talked to every doctor I could about WHY and what might be the underlying factor.  Finally we got an answer through more blood work, skeletal scans and testings.
I was an English teacher and literary criticism was my forte' and so researching came pretty second nature to me and it was a part of this prognosis I felt I could control.  I still rely on this tactic to keep me sane.  It has served me well over time and even though I am no longer dissecting what Shakespeare, Virginia Wolf, or Thoreau meant in a certain passage, I am figuring out what SIOD is and directly in contact with the researchers that are working hard to come up with a way to prolong our otherwise life limiting children's lives.
Did you know that research actually began with Dr. Boerkoel in Canada and our initial efforts began there.  Unbeknownst to me at the time, a Dr. D Lewis was traveling to this lab and knew about our Emily in the lab.  Why is this important?  Because fast forward to 2017 when the Canadian lab had shut down, Dr Lewis at Stanford took what could be salvaged from Canada and went to work in California.  This is important full circle stuff here.  It meant we didn't have to give up hope, it meant we didn't have to find, beg and borrow for someone else to help us find a way to help not only Emily, but other children as well.  It means that funding and grants we otherwise couldn't get are now possible that the research is in the USA.  It means we really didn't have to skip a beat in our efforts to educate, raise awareness and funding for SIOD!
As Emily works on recovering from yet another hospitalization, another complication, another stressor on her warrior body because of SIOD we ask you to take a look at our website link below and see how this quest fits into your world and what you might be able to do to help.  Please continue to follow and share and give from the heart.
https://thelittlegiantsfoundation.org/

Believe-