Hot dog, hot dog, hot diggity dog.
If little Hezekiah Goad could speak, those would have probably been the words out of the toddlers’ mouth Saturday as family and friends gathered at Hillsville Elementary School for Goad’s third birthday party/Disney World sendoff. Kiah’s favorite characters, Mickey and Minnie Mouse, were also on hand to celebrate.
Goad, who was born 14 weeks premature, has been through 11 surgeries in his short life, nine of which have been brain surgeries. Doctors recently gave little Kiah little time to live, so the Make A Wish Foundation sped up his wish to go to Disney World. Goad will also visit Universal Studios and SeaWorld while in Orlando, Fla. from Jan. 14-22.
“He will turn three on January 17. I think they purposely did that so he can spend his birthday in Disney World,” said Hezekiah’s mother, Carrie Goad.
Goad estimates many families in situations such as Hezekiah’s choose Disney World as their Make A Wish destination, so the foundation sends screeners to visit with potential families to make sure it is the child’s wish and not the wish of the family.
“They come to the house and want us to show them how we know Kiah would like Disney World and Mickey Mouse. Kiah can’t speak and he can’t relay it to you other than when you turn on the TV it better be Mickey Mouse, and when you turn it off he starts having behavior issues,” Goad said. “He is going to let you know you need to get it working again if Mickey goes off. Even if he is having a bad day or hurting, we can put him in his room, he likes to be in his bed and it is one of the things that calms him down.”
Goad said the family found out December 21 that Kiah’s Disney World wish had been granted. On that same day, Kiah’s MRI results came back with some good news.
“Even before Christmas started we were already pretty blessed,” Goad said.
Even so, the family is dealing with the heartbreaking diagnosis from doctors that Kiah only has about six months to live. Goad said it has been tough for the family, which includes Kiah’s father, Garrett, and sister, Bailee. But then again, Kiah has always been a fighter and continues to defy the odds.
Born about 100 days early, Kiah coded three times the first night he was alive. Doctors told the family he wouldn’t make it out of the hospital, but 96 days later, he was able to come home for the first time. When he was first born, he had to have CPR for 15 minutes, which caused two brain bleeds. Those brain bleeds turned into four blood clots. Because of those blood clots, a tube was inserted from the brain to the spine. The blood clots got clotted in the tubes, Goad said, building up fluid on the brain because it couldn’t get to the spine. Kiah weighed approximately one pound at birth, but now is up to 30 pounds.
“When they told us that he has six months left it was pretty heartbreaking. I asked if we should even sign him up for school or let him stay home, should we continue his therapy,” Goad said. “Kiah is not supposed to be alive. The fact he wakes up every day is a miracle but they are afraid if I give up, he will give up, and I if stop his therapy or stop thinking about school, he will give up. The fact that he is striving, you have to keep getting up and going for him. He shouldn’t be alive and the way his brain looks right now he should not even be home, he should be in the emergency room, and yet he is in his bedroom right now and telling his nurse off. Kiah is such a miracle because he has so much of his brain missing and what he does have is damaged, but he is learning and he is smart. He is not failing to strive, he is doing the opposite.”
Still, Goad said Kiah’s brain is showing very bad things. He has a cyst that is pushing on his brain stem. If it pushes just right, it will kill him immediately. The doctors say another surgery would have a 50/50 chance of killing Kiah or helping him.
“They will not take him in for such a risky surgery and if he can maintain without surgery, they will let me. Their mission statement was to let Kiah fight and when he can’t then it is our time to step in for Kiah,” Goad said. “The children’s hospital in Winston-Salem told us to go home and enjoy what time we have left.”
But by visiting with Kiah, you would never know he is so sick because he is he happiest person in the world, Goad said. He loves to be around people and is almost always in a good mood. And he continues to baffle doctors.
“Brain scans come in and they see him and he is sleeping and they think that is all there is, but then he wakes up and grins and smacks their hand. They told me Kiah would not even be able to recognize his name. And I said, ‘Hezekiah’ and he looked up at me, and I said, ‘Give me five,’ and he slapped my hand and gave me five and then he said, ‘daddy,’” Goad said. “They wrote a letter stating they were so impressed with a brain-shunt child doing things that a regular toddler learns to do. It is not worth risking losing him by intervening. He will continue to have brain surgeries as long as he lives. He has two shunts in the brain and they fail. He needs another brain surgery. The scans show he needs it but the doctor said he is not going to off the scan but he is going off Kiah. He is not showing symptoms of shunt failure.”
It has been a year since Kiah’s last brain surgery. The young toddler continues to be an inspiration to not only his family, but to the entire community. It was evident on Saturday as so many well-wishers were on hand for his birthday party/Disney World sendoff.
“He amazes me. If I were to survive what he went through, I sure wouldn’t be happy. I would be miserable and hate the world, but he is just a joy,” Goad said. “He doesn’t know heartache, he doesn’t know hate. He just knows pure love and joy. And I want to say a special thank you to the people who have donated their talent and time to make all this happen for Kiah. The community has helped us so much during a heartbreaking time.”
Allen Worrell can be reached at (276) 779-4062 or on Twitter@AWorrellTCN