FLORENCE– On the Rocks is proud to host a fundraising event, Strong Like Kruz Benefit for 3 year old Kruz Devenport and his family. Kruz was recently diagnosed with a rare form of dwarfism called Schimke Immuno-Osseous Dysplasia (SIOD). It is so rare that Kruz is only the fifth person in the US to be diagnosed as having it.
Proceeds will benefit the #StronglikeKruz Challenge and travel expenses for the Davenport family.
The benefit will be held on Thursday, September 22 from 6 PM – 10 PM.
Music by:
Kirk Russell
Jeff Henson & Jordan Denton
Mikey Ledbetter
Scott Boyer III
Logan Clark
We can’t wait to see everyone here for this amazing event!!!
KRUZ’S STORY
Kruz Edward Davenport
My name is Kruz Edward Davenport. My due date was August 26, 2013, but I entered this world in a whirlwind on July 16, 2013. On the fifth attempt at a 4D ultrasound to show my sweet face, it was found that my mommy had lost all of her amniotic fluid and that my heart looked enlarged from trying to keep me alive. She was rushed to Helen Keller Hospital where I flat-lined and was immediately delivered by Cesarean Section. I was not breathing when I was born but, with a great team of doctors and nurses, I was revived and sent to a special NICU in Huntsville, Alabama. I weighed in at 3 lbs 6 oz and was 16 inches long. I did really well while in the NICU and got to go home on August 6, 2013. By all appearances, at that time, I was a normal, beautiful, healthy baby boy.
Around my 1st birthday, my mommy and daddy knew that something was not right and they started taking me to see special doctors. I had a really bad sensitivity to lights of all kinds and I was little for my age. They knew this was not normal. None of the specialists could give any answers, but my mommy, because of a gut feeling, kept on digging. She just couldn’t be satisfied with “I don’t know”.
After months of tests, we finally wound up in a Nephrologist’s office at Children’s in Birmingham, Alabama. An ultrasound showed that I only have one kidney. I have nephrotic syndrome (a kidney disorder that causes the kidneys to excrete too much protein in the urine), my T-cells are very low which causes me to have an extremely low immune system and I am very short in stature. Thankfully, the Nephrologist realized that these symptoms were not normal and she did a lot of research before she started me on drugs that could harm instead of help me.
Genetic testing was performed in June and revealed that I have a disease called Schimke Immuno-Osseous Dysplasia (SIOD). This is a very, very rare form of dwarfism. In order for me to have this disease, my mommy and my daddy had to carry a recessive gene called a SMARCAL1 gene. It was a 1-in-3 million chance that they would meet and have a child. There are only 45 known cases of this disease in the world and only five 5 in the United States. This makes me “number 5” in the US.
We will be joining a research team and the Little Giants Foundation (www.littlegiantsfoundation.blogspot.com) to raise awareness and help raise the funds needed for research to provide a cure. The doctors conducting the research for SIOD have cloned another SIOD patients genes and believe the drug Ataluren could bypass the gene mutation for children with Schimke. This 3 million dollar research offers BIG promises and could prolong my life and the life of other SIOD patients.
Statistics and life expectancy are just a number to us. My mommy, daddy and I are fighters and we are ready to see this through with an aggressive fight. Please find it in your hearts to donate, as we HOPE and BELIEVE that through GOD and your help that a cure will be found. I can be found on Facebook at “Pray for Kruz” and my hashtag is #KruznforaKure. THANK YOU and may GOD BLESS!! Kruz
WWW.Prayforkruz.com for more information and to make donations directly to Kruz Davenport Benefit fund.
