So many things!

 There have been so many things happening the past several months. We will let the pictures speak to you mostly. To recap: Our little Giant warrior princess, Emily has been in and out of the hospital since last November for surgeries and relentless migraine pain that has not gone away since Nov 4, 2002 despite the many attempts to break it for her. 

On the up side, more funding keeps rolling in like this nice chunk from Meteo Stars Gymnastics  I’m our local area. 

We are continuing to try and find some answers for our SIOD children and these neurological issues that are going unexplained for now as we work to find the research to help them and others. 

GIVING TUESDAY SUCCESS & MORE

 THANK YOU! We set a goal of raising $2000 this #GivingTuesday, and thanks to 29 donors we were able to raise $2,710! Because of your unwavering support, we will be able to add to our $100K goal for SIOD brain research.  From the bottom of our hearts, thank you! And the giving doesn't stop there.  Our matching funds started yesterday ( see attached flier) and we are eligible for bonus funds as well TBD.

Please be sure to visit Emily's caringbridge site link found on this page to see the latest on her own battles with neurological issues as she has been inpatient.  Again- thank you for your support.  Together We Can Do Something Extraordinary!

The Brain

 The brain is so complex.  Emily's brain keeps us on our toes as well as everything else about her and this SIOD disease.  We had a few good months with no breakthrough seizures or episodes or migraines and then last Thursday evening- wham.  She has been having them every evening since then and sometimes multiple times and Sunday evening was a doozy with a whopping, painful migraine, dizziness and extreme nausea.  We post a lot of education, informative pieces and much of it shows the good days with Emily.  This is what her life is like more often than not on any given day.  It isn't all pretty.  It isn't easy.  It isn't smooth nor is Emily ever "out of the woods".  This disease isn't going anywhere and it reminds us when life begins to become typical again.

We keep on keeping on.  That is what we do.  Today she is getting her IVIG treatment.  Today is a better day so far.  Today we continue to fight for Emily and all SIOD children.

Here's how you can hep us:

We have another  $100,000 project at Stanford ahead of us to help fund some of the neurological issues our children with SIOD experience to find out the why’s of these happenings. Can you help?  

To become a monthly donor: go to the LGF link. Click the Drop down menu once you click to donate. Easy as 1, 2 3! 

https://thelittlegiantsfoundation.org/donate-index-impact

Connections

I help families connect with doctors,other families and researchers around the world for SIOD to build and gather strength to endure a challenging medical journey.

Recently I was able to help another mom.  Her child's battle may not be with SIOD, but that's okay.  I want to be a beacon for others out there wrestling with their own diagnosis and challenges.  Truth be told:

 👉Most people don't know nor will ever know the challenges behind not only Emily's #SIOD, but the behind the scenes, paperwork, calls, emails, and medical hoops we go through especially when traveling out of state. 

👉Most people don't know the stress of whatever is being done medically (ie surgery this time) followed by having to leave other precious family members behind is agonizing, yet something we have grown a custom to during this journey. 

👉Most people don't know what it is like to have a healthy child to guide as the special needs one takes so much time and attention.  As they grow in this medical world, learning and being exposed to more and more. Even when, as in our case, Emily's younger sister is nurturing we try our best to help her feel equally as special. Thank goodness Big Daddy Joe Mo and the Dynamic Duo Grandmas are helpful at tending to her every need!

👉I am grateful I get to help others with their journey no matter where there are at in it.

Full disclosure- I may not always be the best at getting back to you right away, but know I am doing my best each day and will get there.  Many blessings and keep believing.  We do.

#61 and more to come

 We have had many questions of concern when it comes to Emily and her eyes, especially concerning our other SIOD families and if this is part of the disease.  The specialists aren't saying it definitely is, nor are they saying it isn't.  The fact is that until now this hasn't been an issue, yet remember unfortunately not enough children live long enough to find out a lot of key issues when it comes to SIOD.  So again, Emily is teaching us about SIOD.  Since her surgery in July from the right eye detached retina things have been a bit harry.

The surgery itself went well, but not the aftermath.  Emily is still unable to see well, if much at all.  Add to that her bronchular issues, and other specialist appoinments life continues to stay busy with her medical needs.  Emily's bronchular procedure was surgery #61 and now we have found that she will have at least 2, if not more eye surgeries in the future.  One on each eye and perhaps a few more.  

We have Emily's specialists from head to toe working on her SIOD needs and working with Stanford and others like AI duPont on the EAST coast that know her to try and come up with outside of the box thinking.  We want to not only help Emily, but other kiddos with SIOD and what they may experience as they coninue to thrive.

Surgery #60- Eye

 Catch up on things since July 11 with Emily's right eye and the latest surgery on her caringbridge site blogs.  Here is the latest.

https://www.caringbridge.org/visit/emilykoesters/journal/view/id/62e2c3e58d9cce2272b0b33d

Birthdays and Blood Drives

 

We could use your help to save lives AND support the The Little Giants Foundation at our July 9 Blood Drive in honor of Emily Koesters' 19th birthday in Gretna, Nebraska at the Village Square right in front of Gretna Insurance Agency! When the blood drive meets its goals, NCBB will give money back to the Foundation for each donation given.

Please note:

1 NCBB is in Urgent Need Status for O+, O- and A+ donors (Emily is A+)

2 We need just 8 more donors to fill all of our spots.

Emily was diagnosed with a rare genetic life limiting disease at the age of 4; doctors said the life expectancy is typically 9 years. Emily continues to beat the odds thanks to research, amazing doctors AND because of generous blood and platelet donors. Keep the momentum going and Emily smiling by celebrating her 19th birthday with your blood donations. Schedule online at NCBB.ORG /search drives and use sponsor code LGF. Appointments are required! Please help spread the word. #BelieveinEmily #SIOD #Littlegiants #GiveBloodGiveHope #LetsSaveLives