Community Rallies Around CDH Baby

July 24, 2013 Updated Jul 25, 2013 at 8:09 AM EDT

By Rachel Elzufon

July 24, 2013 Updated Jul 25, 2013 at 8:09 AM EDT

Lewiston, NY (WKBW) - Two Lewiston parents, who at one time faced the possibility of losing their newborn son, say their baby is a miracle.

Now the community is rallying behind the infant and his family.

Baby Wes Ryan is three-months-old. Is has gained incredible strength the last few months. Wes was born with Congenital Diaphragmatic Hernia (CDH) -- a hole in the diaphragm that affects one out of every 25-hundred babies.

Wes' intestines and left kidney were inside his chest cavity at birth. His left lung was only 10-percent developed.

At his worst, doctors gave him a 50-percent chance of survival.

"It was the scariest time in my entire life," his mother Kylee Ryan tells Eyewitness News "I just kept thinking of the worst -- how could I not?"

Kylee, her husband Joel and two-year-old daughter had to pack-up and move to Philadelphia. Wes remains in the NICU at Children's Hospital of Philadelphia.

However, he earned a nickname -- Super Wes.

"You could tell from the beginning he wasn't going to give up," says Kylee's cousin, Jill Birmingham.

"All these machines around him -- it was overwhelming -- and to see him now, it's just night and day," Birmingham adds.

After 24 days, doctors took Wes off of life support. Surgery closed the hole in Wes' diaphragm. At five weeks old, Kylee and Joel finally held their son.

"The best feeling -- so overwhelming," Kylee says. "I was overtook with emotion to hold him for the first time."

However, Wes still has a long road ahead of him. Wes is expected to be released from the hospital, and back home in Western New York in a few weeks.

However, the Ryan family has to install an air filter system in their house. They have to be extra careful about anybody bringing germs into their home.

Now, the community is showing incredible support for the family.

Birmingham and Kylee's friend Liz Bernardone are teaming up.

Bernardone's family has been holding a fundraiser every year to honor her sister, who suddenly passed away 13 years ago. This year, the 9th Annual Benefit in Memory of Monica Senese will help the Ryan family.

Birmingham and Bernardone hope to raise at least $15-thousand -- which they say will just make a small dent in the family's upcoming medical bills.

Kylee tells Eyewitness News the insurance company will probably be billed millions of dollars. She believes the family will have to pick-up about 20-percent of the medical bills.

"We don't want (Kylee) to have to focus on the financial burdens of coming home," Bernardone says. "We just prefer that she focuses on him."

The fundraiser will include dinner, drinks, a basket raffle and silent auction. Prizes even include Sabres jerseys and tickets to Chicago.

The benefit will take place Friday from 6-11 pm at the Lewiston Number Two Fire Company, located at 1705 Saunders Settlement, Niagara Falls. Admission is $20.

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