BY JOSH MCAULIFFE (STAFF WRITER)
Published: October 16, 2009

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Noah Severino DeSantis was born with a disease that severely hinders his ability to breathe in his sleep.

Now some friends of the Tripp Park infant's family are banding together to raise funds that will help him, as well as his parents, rest a bit easier at night.

On Oct. 24, the Nurses for Noah fundraiser will be held from 3 to 7 p.m. at the Tripp Park Community Center. The event will include food and beverages donated by dozens of local restaurants, a number of basket raffles and, weather permitting, a classic car display.

Tickets are $15 for adults and $5 for children 5-12, and will be available at the door.

All proceeds benefit the DeSantis Fund, which will go toward round-the-clock nursing for Noah, who just returned to Scranton after spending the past few months at Children's Hospital of Philadelphia.

Born on June 16 at Moses Taylor Hospital, Noah, son of Anthony and Jeanne Waznak DeSantis, was transported to CHOP's neonatology intensive care unit on June 18 when his oxygen levels began to plummet.

There, he was put on a ventilator as doctors performed a battery of tests. Eventually, he was diagnosed with congenital central hypoventilation syndrome, an extremely rare respiratory disorder that impairs the body's automatic control of breathing, particularly during sleep.

"He does breathe a little bit (while sleeping), but not much. Not enough to release his carbon dioxide," Mrs. DeSantis said.

Noah received a tracheotomy on July 31, and each night before bed he's hooked up to a ventilator. He will require 24-hour nursing for at least a few years.

Back home since Tuesday, Noah's "doing very well," said Mrs. DeSantis, who has another son, 2-year-old Nico.

"This is a lifelong syndrome," she said. "As of right now, there is no cure. Every kid is different. Our hope is that when he's a little bit older, he'll just need a mask to sleep with. Time will tell."

Mr. DeSantis' best friend, A.J. Zangardi, and the couple's next door neighbors, Jim and Ellen Cummings, came up with the idea for the fundraiser. According to Mrs. Cummings, about 22 residents from the Village at Tripp Park, where the DeSantises live, have stepped forward to help.

"You can't even imagine. And it's all ages," said Mrs. Cummings, noting Dunmore High School, where Mrs. DeSantis teaches, and Northeastern Educational Intermediate Unit, where Mrs. Cummings works, will have dress-down days in support of the cause on Oct. 23.

"One man (from the neighborhood) just stopped and handed us a check. We never saw him before," she added. "It's just been a really, really humbling experience for my husband and I."

"We're 100 percent appreciative of this," Mrs. DeSantis said. "It's extremely nice."

Contact the writer: jmcauliffe@timesshamrock.com If you go

What: Nurses for Noah Fundraiser on behalf of Noah Severino DeSantis

Where: Tripp Park Community Center, 2000 Dorothy St.

When: Oct. 24, 3 to 7 p.m.

Details: Tickets are $15 for adults and $5 for children 5-12, and will be available at the door. For more information, visit the Nurses for Noah page at www.facebook.com.