Since Jameson Benedict was born almost three months ago, the neo-natal intensive care unit at Crouse Hospital has been his home.
Jameson was born with limited brain tissue, vision loss and duodenal atresia, which means parts of his stomach were not attached. All of these issues formed before he was born.
His mother, Dawn Benedict, has been by his side since he was born.
"Being here and holding him makes me feel like I haven't been robbed of my child," says Benedict.
Dr. Michelle Bode has been treating Jameson since the beginning.
"Sometimes it's just the gut. Sometimes it's just the brain. The combination is rare even for us," says Dr. Bode.
Jameson had a tube inserted into his nose to drain out everything that goes in his stomach because his body can't digest it.
A key step to Jameson going home is inserting a permanent feeding tube in his stomach. The doctors have tried to do it twice, but each time he's rejected it. He'll either vomit or his stomach will get swollen and upset.
That's why Dr. Bode nicknamed him "trouble".
"Jameson decides 'no I don't like that' and he does something like not tolerate his feedings, or not keep his temperature up, or something that says 'no you guys said one thing I'm going to do the opposite,'" says Dr. Bode.
It's an uncertain future for Jameson as his doctors and family wait for his little body to respond.
"If his brain over time develops slowly, then he's going to survive a long time. If it doesn't improve, he could pass away. We just don't know what caused it, which is why it's all unknown," says Dr. Bode.
The uncertainty is difficult for Jameson's mother. "It's very difficult to think about. Very difficult. We don't want to lose him," says Benedict.
Jameson also has an older brother, Nolan, who is 2-years-old.
A benefit to help Jameson's family pay for mounting medical costs is planned for Saturday, August 3. It's from 3 p.m to 7 p.m. at the Village Lanes in East Syracuse.
here will be live music, food and a raffle.
re-sale tickets are $10. They cost $15 at the door. Children under the age of 10 are free.
To follow Jameson's journey, visit their facebook page.