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