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 3^rd 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.https://ghr.nlm.nih.gov/condition/schimke-immuno-osseous-dysplasia (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.https://ghr.nlm.nih.gov/condition/schimke-immuno-osseous-dysplasia (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 

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.

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! (http://michael-zimanske.memory-of.com/)

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.