Saturday, September 15, 2018

Farm Run- Get Ready!

❤It's a beautiful day in Nebraska! Join us for Emily's Little Giants Farm Run🌻🐴 9-30-18 for #SIOD research!
 🏃Registration still open!🎖

Here are the registration and volunteer links:!/showSignUp/10c0f4da9a722a1fb6-farm

Thursday, August 23, 2018

Did you know?

Did you know that the Little Giants Foundation is not only a voice and face for those diagnosed with SIOD like our Emily, it also provides support for research, connects those affected with SIOD and works to enhance awareness with families, doctors, researchers, educators and public and private parties. 

Today was another example of what I get to do and love to do- visit with families affected not only here in the USA, but also around the world- there's not many of us so I have had the privilege over recent years to be able to talk via phone, Skype, messenger and the like with families from all different cultures- despite some language barriers we all speak the language of love and desperation to save our children!

We provide energy, hope and reassurance for one another and build off of our knowledge, concerns, and beliefs for what we can do to really understand on our own levels what this disease is, raise more questions and be a community of support for one another even if it is only a few of us.

My Skype today with this other SIOD momma clear in another country in Europe has been and continues to be a source of empowerment for me as well since we began talking over a year ago.  She found us through the foundation and I am so glad we can be there for one another.

Thank you to everyone who continues to follow our journey with our Emily and BELIEVES as we do that "Together We Can Do Something Extraordinary!"

Sunday, August 19, 2018

How is she in High School?

How? How is this even possible? I mean this literally and figuratively! You see, Emily keeps defying the odds! I can't even count on my hands the SIOD children who have EVER survived long enough to attend High School! 
NOW, don't think that this has come easy. Emily "appears" to look like a healthy young teenager here, yet to unfold her story that keeps writing itself would blow your mind if you don't already know even a portion of her medical journey.
We are so thankful to have this little angel and are happy to keep educating and bringing awareness to this rare genetic life limiting disease- SIOD!
Now go rock this 9th grade year at Gretna High School, Emily!
Go Dragons💚

Sunday, August 5, 2018

Celebrating the original Little Giant

The original reason for our link to LGF!❤ The reason we will always keep Troy "Mitchell" Cupps legacy, honoring Mitchell alongside our Emily! 👫 Happy 14th Birthday,  angel! 🎂We are so fortunate to have met you before your passing over 8 years ago and your precious, funny mommy, Michelle and your dynamic, caring daddy, Troy and those zany brothers and beautiful sister of yours!  #believe #littlegiants #SIOD #angels #love #friendsforlife

Tuesday, July 31, 2018

New Information and Donation Link added!

We are so excited to announce a new link has been added to inform you on the research happening at Stanford Children's Health with Dr. Lewis and his lab and a direct link to the Lucille Packard Foundation for Children's Health, which is where we send our funding to for the aid in research for SIOD!
PLEASE add in your memo or comments in honor of Emily or Little Giants for our tracking purposes❤🙌!

Here is the link you can also find on our side bar info under :SIOD RESEARCH

As always feel free to share!

Sunday, July 8, 2018

Emily's 15th Birthday

Thank you to everyone who came out to support and register and donate for Emily's 15th Birthday Blood Drive with #NCBB! We collected 34 units and had 40 donors!!! We surpassed our goal of 30! That's 102 lives saved! Plus helping save SIOD kiddos with research funding at Stanford!🤗
We had such a great time! Here are a few photos I tried to capture!
Special thanks to Janet Mann Barna and #gretnainsuranceagency for hosting! & Kathy Phillips Scofield aka Loli Pop day Clown and her mad balloon skills! & To Michelle Thornburg for the dynamite cake pops & our family for helping out!

Emily enjoyed helping out and holding hands of those who needed extra love and smiled inside watching others get the pokies!😉😍 #believeinemily #savinglives #littlegiants #SIOD