Community Corner
"Breakfast with Santa" Fundraiser Planned to Support Local Family
Join the family of Ella Rose Monaco at the Setauket Firehouse on Saturday morning.
A year and a half ago, Setauket residents Nina and Eric Monaco welcomed a baby girl, Ella Rose. But Ella was born with a rare disease, Nager's Syndrome, for which there have been fewer than 200 documented cases in the world to date, according to the Foundation for Nager's Syndrome.
Ella's grandmother, Mary Bonsignore, said Ella suffers from micrognathia (severely small jaw), obstructed airway, cleft palate, absent thumbs, underdeveloped radii, fused elbows, congenital heart disease, small lungs, microcephaly, imperforated anus, astigmatism, hearing loss – and eyes that make your heart melt.
"This child has brought the good out of so many people in the community," Bonsignore said. "The family has been so grateful for all of the support from Three Village."
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A "Breakfast with Santa" fundraiser to help the family get Ella the care she needs has been set for this Saturday, Dec. 4, at the Setauket Fire House on Route 25A in East Setauket. Breakfast will be served from 9 a.m. until 1 p.m. The donation price is $10.00 per person, and guests will receive a photo with Santa to take home. The fundraiser will also feature face painting for the kids and raffle drawings with lots of great prizes.
Ella has a tracheostomy tube to help her breathe and a gastrostomy tube to help her eat. Her nurses gave her the nickname "Rockstar." When she was born, the doctor's weren't sure if she would survive, but she has been proving them wrong ever since.
Find out what's happening in Three Villagewith free, real-time updates from Patch.
Now weighing nearly 23 pounds, her family says she can sit up on her own and she no longer needs a ventilator to breathe. However, over the next six months, Ella faces many more challenges: she will undergo five surgeries and intense rehabilitation. She needs round-the-clock daily care; an aide comes to the house during the day and nurses stay with Ella overnight to monitor her while her parents get some much needed rest.
For more information, go to www.lovemyella.blogspot.com or email friendsofella@gmail.com. Donations can also be mailed to Erik and Nina Monaco at 2 Robert Townsend Lane, Setauket, NY 11733.
