MORTON — The Morton High School boys’ basketball team and Coach Matt Franks are hosting the 6th annual Gameball Run event to raise money and awareness for Children's Hospital of Illinois. Each school in District 709 has selected a Miracle Family to represent the services provided by Children's Hospital and the impact it has on Morton families. To financially support Gameball Run, donate online at www.MortonGameballRun.org. Each school is hosting events, with all proceeds going to Children's Hospital of Illinois.
The Miracle Family representing Jefferson Elementary school is the Carr family – Piper, Jonathan, Caley, Kai, Olivia, and Aiyanna Carr. This is their story.
In late June of 2016, Caley Carr gave birth to a beautiful daughter, Kai. She was and appeared to be perfect in every way.
When Kai was seen by the pediatrician for her two-week well-child checkup, the doctor discovered she had Petechia. The condition is usually caused by trauma to the skin, but can also be a sign of leukemia.
Fearing the worst, Kai’s parents, Caley and Jonathon Carr, took their baby to have several more tests. They were relieved to have the tests come back normal. From there, the parents were referred to a hematologist to try and figure out the cause of Petechia. “To this day, we still have no answer,” said Caley Carr, mother of Kai.
During all of the testing, a defect was found with Kai’s number seven chromosome. Kai was referred to Dr. Hoganson, who is a geneticist in Chicago.
“About two weeks after all the test results came in, we ended up being admitted to OSF Children’s Hospital for failure to thrive and dehydration,” said Caley Carr. “Kai remained there for a week and during that time, we noticed that she had no interest in eating and could hardly stay awake during feedings.”
After 10 months of the constant feeding struggle, Kai was referred to a feeding therapist and saw her two times a month. The doctor ordered a swallow study on Kai and all the results came back normal. The doctor could not figure out why Kai had no interest in food and referred her to a gastroenterologist.
The gastroenterologist ordered an endoscopy and discovered that Kai has a condition called eosinophilic esophagitis, which is a chronic allergy and irritation to the esophagus. The irritation causes the white blood cell count to rise, causes pain, sores, and discomfort while eating.
A dairy and milk allergy was also discovered during the testing. “Once again, we ended up in the hospital for failure to thrive and dehydration and the gastroenterologist recommended a new formula that is free of milk and soy,” said Caley Carr. “However, Kai wouldn’t have anything to do with it.”
Based on Kai’s refusal of the new formula, the gastroenterologist recommended surgery to insert a feeding tube. In March of 2017, Kai had the surgery to insert her feeding tube and recovery was very rough. ‘We all struggled to get acclimated to our new normal,” said Caley Carr.
Today, Kai is still is the under the care of the feeding therapist, the gastroenterologist, and several other surgeons. “Our hope is that one day she will have a desire to eat food on her own and be able to thrive without the feeding tube,” said Caley Carr.
“Kai will always have Eosinophilic esophagitis, as this condition has no cure. We are very thankful to have the resources and a great facility so close to home.”