The Brain Battle

 Neurologic Studies

Biology is very important.  Biology is probably a term that conjures up old high school memories that you loved or hated about it.  And what about the whole dissection lab thing?  I’m sure we all have stories on this.

The work that is happening at Stanford Hospital is instrumental in not only the potential to help our SIOD children; it has the makings to help any types of neurological issues.  That’s why helping us to fund our latest neurogenetics pledge project of 100,000 is so vital. 

Dr Lewis’ research lab will be looking at brain cells and neurons in a dish for neurologic study.  How exciting is this?  Our children are suffering from migraines, TIA’s, stroke, seizures and unexplained episodes.  Not all are vascular as in previous research or able to be detected on imaging.  These cell findings could aid to understand better why there are problems with the central nervous system in SIOD.

Emily had her first seizure on August 23, 2009!  She was inpatient at the time anyhow from months of complications of her kidney transplant- so we thought- and MRI's were showing the first insults of enlarged ventricles and abnormal signals of white matter, and a smaller brain.  EEG's showed her brain function was off and worse on the left side versus the right.

Unfortunately Emily has been battling the seizures, migraines and episodes with little to no answers as SIOD has complicated the spectrum- per usual.  This is what we keep fighting for as well with the research funding dollars.  We must find answers for her, for the other SIOD children and for others fighting their own neurological issues.  We BELIEVE!  Do you? 

Donate Life Month

 "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)

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:

Donate Life Link

Kidney Info

www.kidney.org

Fourteen years ago we nearly lost our daughter...again

 Fourteen years ago we nearly lost our daughter... again.  

Today is living donor day and we had the good fortune of our Emily's daddy being her kidney match.  LIttle did we know at the time that this would not be the only life battle she would face.

It's believed there may be many more children with SIOD, yet most die from end stage renal failure, infection or stroke before diagnosis.  The journey to diagnosis can take years, and as in our case, families are battling life threatening situations and trying to "fix" that not knowing there could be some underlying disease.

Emily has been a warrior princess her entire life.  She came into this world fighting born eight weeks premature and on a ventilator.  At the age of four she had a kidney transplant from her dad and then as we thought we had that under control she got stage 3 lymphoma cancer- twice.  Her story doesn't stop there and has fought her way through life.  Her school experience is not like most wavering between hospital school, home school, and modified curriculum.    And we are at another milestone.  Some big ones.

Emily attended her Senior Prom last weekend!  She will be graduating May 15th.  Milestones for any child indeed.  Yet knowing her story- even the brief snapshot I give here- it all is miraculous.  

Last Saturday I went to pick up her wrist corsage from our favorite local florist- Linda at Town & Country Floral Gretna.  Emily has been coming to her shop for years delivering May Day baskets and they have grown quite fond of one another.  As Linda and I talked of Emily and her opportunity to attend prom and what a big deal it is for her to graduate, I told her to stop as she was going to make me cry.  She proclaimed, go ahead- cry away. I did not.  At least not at that moment.  I got in the van and was driving to our dear friend's home to help her decorate for pictures later that day and I began weeping uncontrollably.  They weren't tears of joy or pain, just a waterfall of that moment.

I wrestled with myself as how to stop before I reached my destination.  I wondered what kind of mess I would be later in the day.

Decorating for the prom pictures was the distraction I needed. I also relished in being the little birdie watching Taylor-Jo do Emily's make up and their interactions.  Everyone at the pre prom picture gathering was kind and inclusive.  The cheerfulness on Emily's face the entire time brought such satisfaction to this mama's heart.  

Joe and I drove Emily to and from each place- Hiro 88 to meet the same picture group for supper ( Joe and I ate next door and gave her meds in between stops) the Beardmore Event Center in Bellevue, for the dance, and last stop- Gretna High School for post prom.  

We had back up plans in place.  I had adult contacts at all of the places.  Some point person to watch over her.  Emily had her phone.  Everything went well.  I was on high alert all night long, yet she had a blast and made new friends along the way.  I knew when I took her into the dance and kissed her forehead and turned to talk to a staff member for a moment and to my surprise watched her saunter away to friends in the dance room that all would be okay.  I stood there unsure of what to do for a moment.  I have always been with her.  Helping her.  Guiding her.  What do I do?  I told myself- turn around and walk out.  She is happy.

Our entire family learned some things last Saturday night.  We are thankful for the experience that turned out drama free.  We know that despite all of the trauma we have all gone through we always prevail and make it through.  We also know that we can have fun in this journey and begin to let her grow.