Child With Rare Disorders Spending Christmas at Home With His Family
Five years ago, we introduced you to Caleb Hlebiczki. He was born with two rare disorders, CHARGE Syndrome and George Syndrome, as well as many other abnormalities, like cleft palate, two holes in his heart, hearing loss and water on the brain. All things doctors told his parents he may never overcome.
"One day they walked into the room at the Children's Hospital and a neurologist came in and he didn't know Caleb was deaf at the time and started snapping his fingers at him. I said what are you doing and he was like he is not responding and I was like yeah but he is hitting his milestones, I think he is fine and he said I think you better take your son home and make him comfortable," his mom, Sarah said.
Today, 8-year-old Caleb is full of energy and always has a smile on his face, something his parents dreamed to see.
"When he was born his was the sixth kid in the world to have charge and George syndrome so he was very rare," Sarah said.
Caleb has made significant strides in the last four years. He attends school at Woodsdale Elementary, something else his parents weren't sure he was going to be able to do. Caleb's George Syndrome caused him to not have an immune system, meaning if he caught the common cold he could die.
His parents would have to disinfect everything from their clothes to every single grocery item they picked up from the store. "You would have to immediately strip off all of your clothes get in the shower and scrub yourself before you were actually allowed to enter your own house," his father, Brian said.
Caleb has since received more than 50 surgeries making it possible for him to live his life normally. He and his family are hoping to make a trip to Disney World through the Make-A Wish Foundation sometime in March.
"We finally new we were getting safer. He wasn't 100 percent out of the woods yet like he could still get very sick. But to know that he was starting to show a response to the transplant we new we were safer then when he was first born," his mom said.
Caleb spent his first few Christmas's, birthdays, and other celebrations in the hospital being away from family. His first ornament was made for him by nurses.
This year, the Hlebiczki's are just happy to be together for Christmas. "Being here and enjoying our family instead of all of the craziness that comes with Christmas because we know what its like to not be able to be home," Brian said.