We Take the Good, We Take the Bad...

This past week has been so full of emotions.  I hardly know where to begin.  As I shared on last week's blog we lost a dear transplant friend, Emerson Nicole White at the age of 13.  While this has been heart wrenching in and of itself, then a few days later we learned of the passing of another SIOD child, Leart at the age of 7.  Leart was diagnosed in October of 2014 at the age of 3.9 years and and this October had a kidney transplant from his momma, but it rejected only 12 hours later and on November 21st he got his angel wings.

I become friends with these families, first they find us or are put in touch with us by way of the Little Giants Foundation and we share experiences, I answer questions and work to guide them on this SIOD journey as best as I can and each child is so important to me.  We have done so much as a foundation and because of donors and supporters we have been able to send a lot of money to SIOD research funding, but at times like these it doesn't seem to be enough.  It is deflating, yet empowering. Empowering because I know how desperately we need more steady donations to come in to help fund the life saving research happening at Stanford.

Please consider us this Giving Tuesday- Dec 3rd and during our affiliates Matching Funds Program Dec 1, 2019-Jan 6, 2020!  Click DONATE at this site or on our website and if your heart is lead to, click the monthly drop down menu option.  Every dollar matters!

We want to thank the DO GOOD RUNNER group for putting on a charity run at Zipline Brewing Company in Omaha this past Sunday for Little Giants!  It was a beautiful day for a 5K!

The girls and grandmas and I delivered our -what has become an annual tradition the past several years- "Emily's Comfy Pillows" to children battling an illness. We have given these pillows to Children's Hospital in Omaha, UNMC Pediatric Unit, AI du Pont Children's Hospital in Delaware, and now to Angels Among Us- our non profit friends who help financially for children going through cancer treatments and their families.  All of these places have helped us and we are happy to be able to spread the comfort and joy.

The story behind the pillows:  While a patient in PICU back in 2009 (and many times before and since) , Emily’s grandma Shari and her aunt Marsha made pillows to help support her on her side and to cushion her. 

We offer Emily’s Comfy Pillows for the family member to use while they are healing as our way to pay it forward and let them know they are not alone in this fight. Emily has been at UNMC and Children’s in Nebraska, in Delaware at Alfred I duPont Hospital for Children and Stanford Lucile Packard Children’s Hospital. We invite the family to use Emily’s Comfy Pillows for their ailing family member or pass them along to help another child during their stay in or out of the hospital.

 Angels Among Us

 
Leart at age 3.9