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!"

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💚

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

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❤🙌!
https://my.supportlpch.org/fundraiser/1531724

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


As always feel free to share!
Believe🙌

Sign up to fight SIOD

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

Click here☝
And/or Printout and scan & spread the love👇

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

Roll up your sleeve in honor of someone special!

We would love to see you all at Emily's 15th Birthday Blood Drive! Come roll up your sleeve in honor of Believe in Emily Koesters! #SIOD #fiftyspotstofill #littlegiantsfoundation #believe #ncbb
Registration link with details👇
https://donor.ncbb.org/web/GroupLanding.aspx?s=lgf

EVENTS!

May and this beginning part of June have been crazy good busy with Emily healing after surgery and doing her therapies, and we are still going strong with Mrs. Nebraska Worldwide appearances and speaking engagements!  I have been helping prepare for the golf outing June 12th and we are proud to also announce a huge event surrounding Emily's birthday in July! http://www.ncbb.org/lifesaving-story/emily-koesters-blood-recipient (click the link) - And don't forget our registration is open for our Annual Farm Run Sept 30!( click to register: https://ultrasignup.com/register.aspx?eid=8923

Gotta run to doc appointments now!

BELIEVE

Farm Run

Fundraising Opportunity⛳

⛳Calling ALL GOLFERS between Lincoln & Council Bluffs!
🏒Registration is OPEN for our affiliated fund 2018 Gretna Community Foundation Golf Outing! Get your spot & join us for a fun-filled day supporting two great causes- one of which is our Little Giants Foundation❤! #SIOD #believeineemily
Details in the pics!👇

EMILY'S HIP SURGERY UPDATE

NOW FOR THE SURGERY ADVENTURE:
IF you have been following us on my FB page, or Emily's or our LGF page you may be a teeny bit familiar with the complexities of what it takes to get things that are even medically necessary to get approved, especially when it comes to the necessity of having it done out of state. Let's just say that we have been working on this since September of LAST year!!! Another reason I am in contacts with our Senators and "leaders" of the medical communities to make crucial changes needed in our system on behalf of children with life limiting diseases, like Emily. Anywho, Emily and I left on Monday, April 23 via donated miles on Southwest Airlines. Talked with a very nice, connected man who we will be staying in touch with and hoping for good things to come. We were taken to the Ronald Mc Donald House of Delaware and it was nice to be at a Home away from Home and familiar place we have stayed at at least 6 times over the past 4 years. Tuesday Emily had x-rays head to toe pre surgery- Dr. M is very thorough and such an expert in Skeletal Dysplasias, albeit not exactly SIOD, but in general. ( We had a slight hiccup with those xrays, which were pre approved back in NE with our services, but one phone call and it was resolved). Wednesday, April 25 was the big day. Dr. M was done extracting the hardware from both of Emily's hips just under 2 hours. He and Colleen ( nurse practitioner who is fantabulous) reported to me that the xrays from the day prior showed some calcification above her pituitary gland in her head that wasn't there prior. So they and the radiologist wanted an MRI of her brain to make sure it wasn't a tumor or something given Emily and her history and her disease of SIOD. Emily was very sleepy post op and we went to her room. The afternoon and evening overnight were a bit rough as one might imagine getting pain under control and figuring out how much to move. Everyone at AI duPont Children's Hospital/Nemours were as great as before to help us out. Emily's MRI was done Thursday morning. Initial reports show what they saw, but not anything more abnormal, so I am still not real clear on this and we will be following up at home with our docs. I will say this threw a huge lump in my throat as anything is possible with this kiddo and this disease and my mind went to places I had to work real hard on counteracting with my meditation strategies due to stress, lack of sleep, etc...PT got Emily up and moving very slowly after the MRI. Emily was not happy and started reciting old sayings of phrases and such that we have heard before and breaks your heart, but mama lion had to nip it in the bud and bring out the tough love with an edge of empathy to help motivate her and keep her mind right. This part of the "job" is never fun or easy, especially clear across the country on your own, but necessary and it seemed to have worked. We were discharged to the RMDH Thursday late afternoon ( grabbed the hardware as Emily and I really wanted it for a few reasons) and then left for home Fri afternoon. Thank goodness for nice people in the airport and that Emily is a super travel partner despite the pain. We sat next to another great guy on the way home- divine intervention- with some connections and we are looking forward to our future collaboration with him as well! ( he kind of reminded Em and I of Clark Kent and even had on RWB socks- just saying...)
Emily has made great strides even in the day or so we have been home! Literally. She is walking with better steps with her walker and us behind her as she has to heal- there are holes now where the hardware was that need to fill with bone over the next six weeks, so her bones are fragile and falling would not be good at all!!

Well, there ya have it- Three Jam packed months of crazy busy fun,and some not so fun and in between all of that was doctor appointments, IVIG treatments/labs, therapies, and school and life in general.

As always we appreciate our followers and try to keep up as it won't be slowing down any time soon! SO MUCH coming!

BIG NEWS COMING ABOUT SIOD collaboration! WATCH FOR IT HERE!

Early Bird Pricing for our 5th Annual Farm Run!

LITTLE GIANTS 5TH ANNUAL FARM RUN

SIGN UP NOW TO GET IN ON THE EARLY BIRD PRICING!

5K ( WALK OR RUN)

1.5 M WALK

 AND 1/4 MILE KID'S DASH

CLICK THE LINK BELOW AND SIGN UP TODAY!

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

New Sign up registration!  New Timing Company!

Same ol' fashion family fun!

Take me out to the ballgame!

We are so excited for Opening Night at the Omaha Storm Chasers baseball game, Thursday, April 5th!⚾🌀
We have 50 tickets for purchase @ only $12 a piece!
Little Giants Foundation❤ will be the community organization of the night!
Contact me, Erin Koesters, ASAP! (Info on flier photo)  Tickets proceeds will go to #SIOD research on Believe in Emily Koesters behalf!
#gretnachamber #greateromahachamber #sarpycounty #fundraiser

Nebraska Rare Disease Day Proclaimed

Nebraska Rare Disease Day Proclaimed 2-28-18!
#SIOD recognized. What a special day!
Http://www.wowt.com/content/news/Rare-Disease-Day-in-Nebraska-475940343.html

Emily's Nebraska Little Giants Day/Week

In honor of celebrating our differences with our friends Omaha Storm Chasers 🌀⚾and the five elementary Gretna Public Schools💚, we engaged in several activities in our community.  I enjoyed spreading awareness and educating the children of our community about kindness, our daughter Emily Koesters and our Little Giants Foundation❤ as Mrs. Nebraska USA Worldwide!💃
I shared Understanding Dwarfism book "Not Too Big, Not Too Small...just right for me!" by our friends James Korpai and Darlene.  The Stormy mascot and friend, Becki also read and helped act out the books with the students.
One evening we attended a home HS basketball game and threw out LGF shirts. The middle schools helped educate about Emily and LGF, too. Emily's school, Gretna Middle School had activities all week and all of the students and staff wore PINK stickers with Emily's name on Friday. So cool. Emily even received an award.
Also, the staff who chose to participate in wearing jeans on Friday donated $5 each and chose our organization. They raised over $2,000 toward SIOD research!🤗
I am super stoked to announce LGF will continue to TEAM UP with the Storm Chasers during the opening game of their season, April 5th! Specific details to come! ⚾🌀❤  #SIOD #believeinemily #gretnapublicschools #omahastormchasers #mrsusapageant
#mrsworldwidepageant

Exciting SIOD Research Update

Emily and I had a very productive time while in California this past week.  This had been in the works really for the past year.  If ya'll recall the original lab in Canada shut down in Dec. of 2016, but Dr. Boerkoel put us in touch with Dr. Lewis from Stanford who was taking over what could be salvaged from the Canadian lab and working on really three primary things for the good of SIOD.  1. T- cell deficiency ( immune system,  Haplo stem cell transplant prior to kidney transplant- if possible with a less invasive chemo regiment) 2. Vascular work for the issues with SIOD and 3. ultimately a drug protocol for all children diagnosed with SIOD.  
Again- this is all research, and much more to it than I am posting here and in the beginning stages, but exciting none the less and great to be in on the ground floor! Along with this comes a hefty, yet doable, $30,000 a month to keep the lab open and $6 million to carry out the research for it to be a realization! We will address this more later and how ya'll can help prolong Emily's life and others! I took several pics of the docs there, the lab where DNA work is active and those working in the lab.  Everyone was thoughtful, genuine and great to talk to while Emily and I were there.

So, as you have read 2018 has been interesting to say the least thus far.  I haven't even touched on all the health care issues with Emily and other children with life limiting diseases that I have been working on with our government!  Or what lies ahead this year! 

Thank you for Believing in Emily and remember, Together We Can Do Something Extraordinary!

Follow the link to DONATE on this page! Even $1, $5, or $15 makes a difference! Truly.

Believe-
Erin Koesters

SAVE THE DATE!

SUNDAY, SEPTEMBER 30, 2018 @ 4 PM

Watch for more details to come!

Write it on your calendars today.