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! (