February Feature: Nebraska's Little Giant- Emily Koesters

I love the color pink, animals, especially the cheetah because it is fast, and everything nature. When I get older I want to be a singer by day and a cop by night.  My parents have always told me I can do and be whatever I want to be even though I might have challenges along the way.  The odds may be stacked against me, but I have defied them all so far and believe one day the researchers will get the much needed money to find a treatment for me and other children with Schimke.

My name is Emily and I was diagnosed with Schimke Immuno-osseous Dysplasia or SIOD—a complicated medical term for one of the rarest forms of Dwarfism.I am proportioned and stand 41 inches tall at twelve years of age.  My condition is so rare that I am only one of four others in the United States who have been diagnosed with Schimke, and one of only 45 across the world. It’s believed that many more children may have Schimke but the journey to a diagnosis can take years and most lose their battle from the symptoms of kidney failure or stroke before they’ve been accurately diagnosed. Doctors in British Columbia, who have worked on their own time, money and resources, have cloned another patient’s genes and believe that Ataluren (originally developed for those with Muscular Dystrophy) could bypass the gene mutation for children with Schimke. This is a shovel-ready project that offers extraordinary promise — Little Giants Foundation (www.littlegiantsfoundation.blogspot.com) was formed to share this advancement with others and to assist with the $3 million dollars needed to complete the research and testing.

I am classified under the Spondyloepiphyseal dysplasia-  SED type of dwarfism, yet my rare genetic dwarfism disease suggests it is a type of SED all it’s own.  When I was four I had a kidney transplant from my dad only to have to begin a long fight for over two years against lymphoma cancer.  I have had 48 surgeries over the past seven years from minor to very major issues, but I keep fighting. I have had to relearn how to walk three times and to relearn to talk and function twice.  I get around the house okay most of the time, but I need to use forearm crutches and a wheelchair depending on the distance and the discomfort in my back from a curved lower back.  

Join our fight! Together, we can do something extraordinary.

#hugs2heal raises awareness for Little Giants

#hugs2heal raises awareness for Little Giants: The Koesters family hopes to prove the healing power of hugs. Through the Little Giants Foundation, the Gretna family has kicked off the social media campaign, #hugs2heal. The campaign’s goal is to educate and raise awareness for the foundation and those with rare forms of dwarfism.

Hugs2Heal Campaign

For our sister! #littlegiants #hugs2heal
Start posting to social media everyone!  Tag our mommy if ya want, too!
BELIEVE
Taylor-Jo and Pumpkin

#Hugs2Heal Campaign

For the first time, we are requesting your support to help raise awareness of Schimke Immuno-Osseous Dysplasia (SIOD) and the Little Giants Foundation(LGF) through a social media campaign from Feb 1, 2016 through Feb 11, 2016 (Emily's Nebraska Little Giants Day proclaimed by former Governor Heineman and Mayors in Gretna, NE and Springfield, NE!)  
We want YOU to:
1. Capture a hug on camera with a: friend, family member(s), pet, team, church, school, organization, daycare, business, work place, etc...
2. Upload that photo and tag it with: #littlegiants #hugs2heal
3. Share it on social media (don't have social media, email or text the photo to me and I'll do it for you!)
4. Invite those you know to do the same
WE CAN'T WAIT TO SEE THOSE PICS POPPING UP FEB 1st!  We'll start it off via facebook, instagram and twitter the eve of Jan 31st!  Get your cameras ready!  Let's show Emily and the other families afflicted by SIOD some love!
BELIEVE
Erin

Troy "Mitchell" Cupps- January's Little Giant!

Featuring Troy “Mitchell” Cupps our Little Giant of the Month! He is the Reason Little Giants Foundation was started! Taken from a memorial page, here is a brief overview of this brave little boy's life!:

Troy “Mitchell” Cupps, beloved son, brother and grandson, left this earth for 
the arms of our Heavenly Father Tuesday, January 19, 2010. Born August 5, 2004, 
Mitchell came into this world the light of his family’s lives. He was born with 
Schimke Immuno-osseous Dysplasia, one of the rarest forms of dwarfism in the 
world. Mitchell was one of only four in the nation with the condition and the 
smallest. His untimely death was a result of health issues caused by his rare 
dwarfism. He is survived by: his parents, a sister, 
and two brothers, grandparents and a great-grandmother. 
a maternal aunt and uncle, a paternal aunt and uncle and a cousin, Godparents, physicians, and numerous classmates, friends, teachers, nurses, doctors, fans and followers all over the world. Mitchell inspired and amazed us 
all with his determination to conquer any challenge that came his way. He often 
delighted friends and family with his martial arts abilities, breaking boards 
and sparring with his brothers. He was presented with his black belt in Tae Kwon 
Do shortly before his death. Mitchell attended Metro Christian Academy where he 
made many friends of his classmates and teachers, and enjoyed riding his scooter 
and bicycle, skateboard and sled. He could count to 10 in English, Spanish and 
Korean. One of the highlights of Mitchell’s life was the night he joined the 
Oklahoma Bulls baseball team as Player 03. He was honored December 1, 2009, with 
his own “Mitchell Cupps - Little Giants Day” by former Tulsa Mayor, Oklahoma Governor, and Metro Christian Academy. As the face of the Little Giants Foundation, Mitchell inspired the young and old, big and small, with his zest for life. In his brief time with us, he demonstrated a rare courage that 
few of us will ever know. He understood his differences and adapted to his physical challenges without hesitation or complaint. His sweet, shy nature belied a strong little-boy’s will to do what other kids do naturally-play, 
laugh, love and learn. Mitchell leaves for us a legacy in purpose that will last forever. Those near and far were touched by stories about him that appeared in 
newspapers, magazines, television, and the internet. All who knew our Little Giant will miss him terribly. What the world has lost, heaven has gained.

Joe, Emily, and I were so blessed and privileged to have known Mitchell and his family! ( Taylor-Jo wasn't born yet.) We came together by way of the Little Giants Foundation, then met and became friends for life with this family as we have an unspoken bond because of our children with SIOD.

Joe and I are humbled to have taken over the Little Giants Foundation as of August of 2014 and grateful that Troy and Michelle- Mitchell’s dad and mom- entrusted us in it's care! Emily may now be the “face” of Little Giants, but Mitchell will forever be in our hearts and our hero from above!

Happy New Year!

Emily's Caringbridge Update

Giving Tuesday

Today is Giving Tuesday and the kick off to our affiliated fund of the Midlands Community Foundation's Matching Charitable Program of which the Little Giants Foundation is a part of! (See their website noted below for details) So instead of sending out Christmas cards this year here is ours on social media and we will instead donate to our nonprofit Little Giants Foundation. 💗 Please consider giving and you may do so in 3 ways: (1) go to www.littlegiantsfoundation.blogspot.com (2) go directly to www.midlandscommunity.org & to Little Giants there or (3) send checks made out to LGF to 15603 S Hwy 6, Gretna, NE 68028. We thank you for the support for our Emily's rare disease and others afflicted past, present and future! Please feel free to share and Merry Christmas & Believe from Joe, Erin, Emily and Taylor-Jo Koesters ‪#‎givingtuesday‬ ‪#‎believe‬