Our 8th Annual Cocktail Event: The Curve Ball will be held on February 13, 2016. We were lucky enough to have this year’s host family attend our monthly board meeting at Harry Caray’s in Lombard. Kayla Kud was born on March 28, 2012 and welcomed into the family by her parents, John and Melissa and two big sisters Gianna and Aubrey. She has had many health issues that affect her both physically and academically. At age 3, Kayla weighs only 17 pounds and remains undiagnosed. She has many cognitive, physical, developmental, occupational and speech difficulties.
“Since Kayla has not been diagnosed with a specific disease or disorder,” said Melissa Kud. “We have no idea what the future holds for her. It’s not as much about the actual name of what she may have, but it will give us a better understanding of what is to come in her life. We can do research and learn more about the disease if there were an actual diagnosis.”
She spent 34 days in the NICU, has undergone multiple surgeries, has undergone multiple tests and been hospitalized on numerous occasions. Kayla sees physicians in 13 specialties as well as 8 therapists for speech, physical, developmental, occupational and nutrition. At age 3, she is not scooting, crawling, walking or talking.
The doctors have not been able to determine what caused the congenital defects. She is currently participating in a study with the National Institutes of Health in an effort to find a diagnosis and better understand her medical conditions. Her medical issues are many and still evolving. This is what we know today about her medical condition:
* Profoundly Deaf (left) & Moderate Hearing Loss (right)
* Visual Impairment
* Heart Defects—Bicuspid Aortic Valve & a hole in her Heart
* Kidney Defects—Left kidney removed in March 2013 before 1st birthday
* Tethered Spinal Cord – Surgery to spinal surgery in November 2014 to untether the cord
* Born with Cleft Palate which was repaired in September 2012
* Fed 100% by Gastronomy Tube (G-Tube)
* GERD (Gastroesophageal reflux disease)
* Hypotonia (low muscle tone / reduced muscle strength)
* Reproductive Abnormalities
* Significant Developmental Delays—approximately 2 years behind; Not talking, scooting, crawling, or walking.
Despite everything that Kayla has been through in her 3 years of life, she takes the bus to and from school each day in her wheel chair that the family purchased.