LEWISTON, N.Y. (WIVB) - It should've been one of the most exciting times in Joel and Kylee Ryan's life. They were weeks away from having baby number two, when at 30 weeks, Kylee had a 3D ultra sound.
"There was a hole in his diaphragm that allowed some of his organs from stomach to go into the chest cavity and therefore compressed his left lung from being able to develop," Kylee exlpained.
It's a condition known as Congenital Diaphragmatic Hernia or CDH. Soon, the Ryans and their 2-year-old daughter, Charlotte, moved to Philadelphia to await baby Wes' birth.
"They gave a higher rate of survival in Philadelphia than they did in Buffalo," said Kylee's cousin Jill Birmingham.
Wes was born on April 23rd. Five days after his birth, he was put on life support.
"He was taken off at 24 days and we weren't sure if he was going to make it or not," Kylee said.
Now 7-weeks-old, he's had four surgeries. The days are filled with milestones and setbacks. One of the greatest days was May 29th, the Ryans wedding anniversary, when they held Wes for the very first time.
Family members have nicknamed the baby "Super Wes Ryan." While Wes continues to get better, Birmingham says they're trying to get a head start on months worth of medical bills.
"Kylee and Joel aren't even worried about that, but when they come home with this baby that's going to be the next big issue they will have to face," Birmingham noted.
On July 26th, loved ones will hold a fundraiser at the Lewiston #2 Fire Company so the Ryans can focus on Wes, when it's time to come home.
"He's really been a miracle baby. He has fought through this and he's had some bad days but he still continues to fight hard," said Birmingham.The Ryans don't know when they'll be coming home. They hope they'll be able to leave Philadelphia's Children's Hospital at the end of the summer.
CDH affects one in every 2,500 babies. And the Ryans are hoping Wes' story can bring more awareness to the condition.
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