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 http://ayudemosalpequenojuan.blogspot.com.es/.  
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.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 


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

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

SAVE THE DATE!


SUNDAY, OCTOBER 9, 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!
FEEL FREE TO SHARE!



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.