SIOD at a Glimpse

Every 21 days an IV start and labs for her IVIG treatment! 😐She adjusts to this routine, and some IV starts go better than others, but it still is a challenge every time because who enjoys getting poked and prodded all the time year after year?! 💉

Emily has a rare genetic life limiting dwarfism disease called Schimke Immuno- osseous Dysplasia (SIOD) and these treatments are one of many things that help keep her with us. Those suffering from immunodeficiency diseases (low T cell function)-as with #SIOD - having poor IgG levels can benefit from IVIg - a blood product derived from blood donors. Her infusions last 3 hours generally and are monitored by a home health nurse as any type of blood transfusion can cause the body to react.😷 We appreciate our friends of which some have been with us nearly 10 years who help to make each time as smooth as possible. 

Little Giants TV segment

Emily and I enjoyed being guests on metroTV! Here is the air schedule for the show that includes our appearance locally:

KPAO - Cox 22 / CenturyLink 89

   - Wednesday December 19: 8 PM

   - Thursday December 20: 4 PM

   - Saturday December 22: 2 PM

Below is the YouTube link for our segment. The first airing took place Tuesday, December 18th in the morning, so please feel free to share at will:

https://youtu.be/k28J7mo1rwk

Merry Christmas one and all!

🎄As has become tradition for our family we are sharing our Christmas card via social media this year and have donated what would have been spent in honor of Believe in Emily Koesters  to our Little Giants Foundation❤. We hope you will consider a donation as well to help raise funding for the research for Emily's disease #SIOD and others afflicted now and in the future. Go to DONATE NOW on the right side of this page and Click the Link .
🤗And our affiliate Midlands Community Foundation is matching donations up to $5,000 for each new donor now thru Jan 7, 2019! That's giving!🎅 Don't forget to please view & share the YouTube video "Believing in Emily"as well! #believeinemily #believeinlittlegiants #SIOD #1OF5INUSA #raregeneticdisease

Thank You for Believing in Emily!

 We are so fortunate to be recognized in the Packard Children's News that is put out by Standford Lucile Packard Foundation for Children's Health.
It is because of you that we were able to send such a sizable amount for #SIOD #RESEARCHFUNDING!
BELIEVE

Falling Into More Momentum

WOW!  Things certainly have been exciting at Little Giants Headquarters ( aka our home).  We wrapped up September with final preparations and the FUNdraising event of our 5th Annual Farm Run! We had a great turn out even though the weather was cold, wet and dreary our hearts were happy! 
October kept us on our toes with Emily's daily, weekly, monthly ( depending on what it is) therapies, doctor appointments, IVIG treatment and labs and a few other tests sprinkled in just for fun.  (SIOD life folks) Emily and I took a medical trip out to our skeletal dysplasia friends at AI duPont Children's Hospital in Delaware the end of October as a follow up to her hip surgery this past April.
November is not slowing down any with the continued therapies, tests, treatments, labs and doctors.  Oh and Emily attends school part time in between!  That's the thing with SIOD, immuno suppression is no joke for these kiddos and as we enter this cold and flu season our precautionary measures get enhanced as even a simple cold can turn ugly fast for a child with SIOD.
We continue to work daily to educate, raise awareness and funding for SIOD research.  Please click on the side link to see what our head researcher, Dr. David Lewis at Stanford in California is doing to help our children now and in the future.  We also have more exciting things to come in future blogs.  I am speaking to as many groups, businesses and organizations as I can muster and note a few good things that have come our way like funding from this summer's golf event with Gretna Community Foundation and one picture of some of our Little Giants Board Members. (missing 3 from that photo- I'll share more later)
Also note we will be participating in #GivingTuesday Nov 27th!  It also happens to be the start of Matching Funds with our affiliate fund: Midlands Community Foundation.  New donors will be matched Nov 27-Jan 7 up to $5.000!  Click the Donate link to the right as well ANYTIME!
Please share, comment and consider becoming a monthly donor.
Believe-
Erin Koesters

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:

https://ultrasignup.com/register.aspx?eid=8923

https://m.signupgenius.com/#!/showSignUp/10c0f4da9a722a1fb6-farm

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!"