Featuring: Piper Smith

Piper Smith was born on October 22, 2004 and passed away on Wednesday, September 17, 2014.

She lived in Johnson City, Tennessee with her wonderful family.

Piper was a beautiful young lady..she was very bright, attended school, loved her friends, loved to dance, cheer, run, and play as all children do with one exception...Piper was born with a Rare Syndrome called Schimke. This syndrome touched every part of Piper’s body from her Immune system to strokes / seizures, end stage renal failure and sadly of premature death.

“Piper passed away on the 17th of September 2014. She is a princess that can never be replaced. I will always be thankful for the joy she brought to our life and I am sad that she is gone. I love you Piper...Now and Always...Your Mom”

SAVE THE DATE!

SUNDAY, OCTOBER 9, 2016

TRUE BUDDY FARMS

Little Giants 3rd Annual 5K Trail Run, Walk & Kid's Race

Out at the sheep farm! Mark your calendars and watch for details in the future! Yeeee Hawww!
FEEL FREE TO SHARE!

Josh Adcock- March Featured Little Giant

Birth Date August 23, 2004.
Diagnosed at age 6 with SIOD after 3 years of testing.  Gained his angel wings on May 9, 2013. 
Lived in Johnson City, TN of USA
Josh's mom, Tammy writes:
Josh was an 8 year old little boy with an enormous love for life and having fun. He had a contagious smile that could light up the world and was full of love for others. He enjoyed riding motorcycles, fishing, playing video games, watching movies, being a cub scout, and spending time with his family and friends, especially his big brother Jake. Josh endured so much in his short time with us but never allowed it to stop him from enjoying life and bringing joy to us and everyone around him. He made the best of every day he was given and taught us all how to enjoy our days in spite of our circumstances. He is missed deeply but the impact he left on all of us {and} will forever remain in our hearts and he will always be the greatest superhero ever in our eyes. We have peace knowing he is healed now and with Jesus in Heaven and we look forward to seeing him again someday. 

Josh is survived by his parents: Terry and Tammy Adcock and his big brother, Jake of course, Larry and Kathy Hilton (Nu-Nu and Poppie), and Wayne and Joann Adcock (Grandma and Pap), Uncle Chris Adcock, Uncle Jeff Hilton and Aunt Luann Adcock....whom Josh's parents could not have survived the journey without them and Josh loved them all dearly.

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