Wednesday, December 28, 2016

Monday, December 12, 2016

Wishes Do Come True!

Please watch these video links and see the magic of Christmas at work!

My Christmas Wish

Wish Granted!

Our gratitude to It Works Global!  I am so proud to be a part of such a giving company!

Erin Koesters

Sunday, November 27, 2016

Author unknown There is no footprint too small to leave an imprint on this world.

It is with a heavy heart I let you all know that this month's featured Little Giant, Jace Williams passed away last night.  In speaking with his mother, Courtney she had told me he had pneumonia in both lungs yesterday and trouble breathing.  Jace was awaiting his kidney transplant and could not fight anymore.  

I told Courtney we will keep fighting for her little giant angel and those that passed before him.  Like I have said since this diagnosis first reared it's head at our Emily, "we are fighting against time".  We cannot and will not take it for granted as we know and have seen and invested in these families and their children.  

Our sincere condolences to Jace's entire family and I will update in regards to his memorial as I have word.

And to all of our friends and family, please wrap your arms of strength around Courtney and her family and show your love for them here in the comments, on our FB page @believeinlittlegiants, or to Courtney Marie Nichols on FB.


Wednesday, November 23, 2016

Jace Williams is our November Featured Little Giant!

Jace Williams is a five year old boy who loves star wars, play doh, singing songs, reading, cars, and Casper the movie!  He was born on August 25, 2011 and was diagnosed at the age of four in May of 2015.

Jace is on dialysis and awaiting his kidney transplant pretty soon. His mom, Courtney and I have become friends through LGF and FB and we actually got to meet along with our two SIOD kiddos one day at Children's Hospital in Omaha recently!  He lives currently in Juniata, Nebraska and his family members include Kendra Nichols, Mark Nichols, Laurie Nichols, Connor Williams, J.j. Williams, Nancie Jones, Greg Jones, Julie Jones.

Courtney shared a fond memory with me of the time Jace go to meet NASCAR drive Jimmie Johnson this past summer!

Sunday, September 25, 2016

Paizlee Davenport-September's Featured Little Giant

You all may recall that Paizlee's big brother, Kruz was our July featured Little Giant- read on to see why his little sister is our featured September Little Giant. (Copied from their website written by their mom and my friend, Jessica.)
 "Paizlee was also confirmed to have the same gene path as Kruz, making her "number 6" documented case in the USA on Aug 22, 2016. She also has Schimke's. Possibly making her one of the youngest every diagnosed. Devestation wasnt even the word we felt. Both of our babies are 2 out of 6 cases of an extremely dangerous rare disease right here in Muscle Shoals, AL. We will FIGHT!!!
We will be joining a research team to raise awareness and the funds."

Thursday, August 25, 2016

Our August Featured Little Giant of Spain: Juanico Jimenez De La Calle

Juanico Jimenez De La Calle 

Born October, 11, 2003 in Cartagena (Murcia) Spain, was diagnosed with SIOD in 2008 and marched with God on November 24, 2014.

I visited with Juan's mother, Angelita De La Calle Hernandez and father, Fulgen Jimenez Hernandez via facebook many times and followed Juan's story on  
Please read the following taken and translated from his blogspot about this precious little giant from Spain:

John is like this: really big one child. We know that we refer to a Juanazo , 
a child with fortitude and strength of a man. Juan faces everyday as an adventure 
despite its difficulties . Without fear of tomorrow , without fear of their 
illness : Free .

Simply observe five minutes to see that is those which, although falling
a hundred times , does not give up : he falls , gets up ; falls ,
gets up, and so until it does. In its review , the most common phrase of doctors
is: No I can not believe ! It seems incredible to have this disease.
Despite his ailments too many! -often Is no complaint or ask " Why ? " . 
Always it recovers thanks to its immense inner strength , which seems miraculous .
His zest for life make him strong and does not decay. Fight for him, for his 
family. We always give to keep fighting together , for him, for ourselves,
for others.

Tuesday, July 19, 2016

Meet Kruz Davenport! July's Featured and Newest Little Giant!

Kruz Davenport of Muscle Shoals, Alabama
Born July 16, 2013
Diagnosed June 30, 2016 just before his 3rd birthday! Yes, the United States most recently diagnosed Little Giant!

I have had the pleasure of talking with Kruz's mom Jessica on and off for the past month or so. Shortly before Kruz was officially diagnosed she reached out to me and wanted to know what to expect. Although Joe and I feel her and her husband Kyle's pain and know all too well the road they are starting to travel themselves, I am thankful to have the opportunity to provide guidance professionally and personally, but most importantly be there for them as their new friends!

Jessica's team of friends and family will be joining us in working on raising funding for our children's research by way of the Little Giants Foundation. For this we are beyond thankful.

Please visit their FB site for Kruz and show them some love!

Taken from Kruz's mother Jessica and their facebook site: Pray for Kruz: @KruznforaKure:

Today we got the results and answers we have been searching 2 years for. He does have what his nephrologist thought, Schimke Immuno-osseous dysplasia, a very very rare form of dwarfism. (I know everyone will google just like we did, this link is from NIH and explains the best) 
This will be one of the hardest things to try to put into words. So I will start by sharing a little about Kruz. When Kyle and I found out we were having a boy, we instantly started planning his life. From what his name would sound like at a sporting event, to what sports he would play. In high school, Kyle was "Mr. CCHS" and I got "most athletic" so of course we just knew he would be big, strong, and destined to play sports. We were planning his life for him. Little did we know God would show us very soon who was in control of his life, and a plan for Kruz far more than we could ever plan or imagine.

Today we got the results and answers we have been searching 2 years for. He does have what his nephrologist thought, Schimke Immuno-osseous dysplasia, a very very rare form of dwarfism. (I know everyone will google just like we did, this link is from NIH and explains the best) 

We have so badly wanted someone to tell us, "your son is fine, hes healthy", We may have no got that answer but he is happy, smiling, and loved. That is what I focus on each day. His doctor did say we may have caught it early enough he can live to be an adult. Statistics and life expectancy is just a number to us. We do know he will have kidney failure in 5 to 10 years though and we have to be very aggressive treating his symptoms of any sickness as they come. We have HOPE and we BELIEVE Kruz will help find the cure for him and other SIOD patients now and in the future. "I praise you for I am fearfully and wonderfully made" Psalm 139:4 

Thursday, June 23, 2016

June's Featured Little Giant: Leart Dervishaj

Leart Dervishaj was born on  December 12, 2011.  He was diagnosed with SIOD 
on October 6, 2014 at two years and ten months old.  Leart is currently four and a half.

In speaking with his mother, Rezarta she told me that Leart, "loves his iPad,his PlayStation4 and going to the park. {He also enjoys} playing with his little brother, Endi and his dad, ARTON.

Right now nothing big is going on with his medical care {although} he is on blood pressure medicine and antibiotics. He does get up in the middle of the night crying of knee pain if he played hard that day. A fond memory of him is when we went to Disney May of 2016 he loved meeting the characters, and being at the pool all day."

Leart and his family live in Guttenberg, New Jersey.

Saturday, May 28, 2016

Featuring Michael Zimanske

Michael Zimanske of Lakeville, Minnesota was born August 1, 1991, diagnosed with SIOD in 1997 and gained his angel Wings March 10, 2005.  He is survived by his mom, Theresa  his dad, Don and his sister, Jessica. (I encourage you to follow his mom, Theresa and her blogspot as she is the CEO and founder of Be The Change.)

Michael was the boy you always saw with a smile on his face. His laugh was contagious. He was active in basketball, loved all sports, the outdoors, four-wheelers, Casey's Pizza, John Deere tractors, camping, Mountain Dew, The Simpsons, and much, much more. He touched the lives of everyone he knew with his positive attitude and awesome personality. Michael, we love you and you will be forever missed by everyone! (

Friday, April 22, 2016

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”

Sunday, April 3, 2016


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!

Wednesday, March 23, 2016

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.

Monday, February 29, 2016

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 ( 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.

Thursday, February 11, 2016

#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.

Monday, February 1, 2016

Hugs2Heal Campaign

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

Friday, January 29, 2016

#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!

Wednesday, January 27, 2016

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!