Brigantine resident Lauren DiSanto, 7, has spent as much of her life in doctor's offices and hospitals as out of them.
Caring for Lauren, who has had a host of illnesses since birth, was already a daily struggle for her parents, Michelle and Tony - then Hurricane Sandy hit. The storm forced the family out of their home, compounding a heavy financial and emotional toll.
While they have managed mostly alone to this point, the family is now looking to the community for help, and on Sept. 29 will hold a benefit dinner and auction at Clancy's by the Bay in Somers Point.
The family does its best to keep in high spirits, but caring for Lauren is a challenge, and a successful fundraiser will go far in helping the family achieve normalcy, Michelle said.
"It alleviates the family's stress," she said. "We can just try to be as typical a family as possible and let everybody be happy."
Lauren was born 16 weeks premature in March 2006, weighing just 1 pound, 5 ounces. She spent her first 140 days in the Cooper University Hospital Neonatal Intensive Care Unit in Camden, where she was found to have various ailments.
She went home at 5 months, but it wasn't long before the family realized she was still unwell. Her continued illness puzzled specialists until at 21 months old, she received a diagnosis of a rare gastrointestinal disease called eosinophilic esophagitis.
Eosinophilic esophagitis is a disease caused when the body overproduces of a type of white blood cell called an eosinophil. Normally, eosinophils are dispatched by the body to combat an allergy-triggering food or airborne allergen, but Lauren's increased levels result in extreme sensitivity to most foods.
Lauren's diet is heavily restricted, and in addition to taking a special amino acid-based nutrient formula through a semi-permanent feeding tube, she must take a daily cocktail of medications to keep her illness in check.
Lauren makes the rounds to 14 specialists and already has had surgery 30 times, with her 31st procedure scheduled for December. But despite her having been dealt a tough hand, Michelle said, Lauren gets by.
"She's a happy kid," Michelle said. "She's a very happy kid. When you're in those appointments, you know, the stress and the craziness ... but she smiles. She enjoys life."
Four-year-old Anthony, Lauren's brother, recently received a diagnosis of a GI disease called food protein-induced enterocolitis, which restricts his diet, but not to the same extent. Medical and travel expenses for the kids total about $20,000 out of pocket for the family each year, the family said.
Michelle was a kitchen and bathroom designer based in Mount Laurel before Lauren was born, but had to leave her job to take care of Lauren. Tony does construction work in Philadelphia, but had to cut back his hours and look for work in the less consistent local market as he spends most of his days repairing his house.
The close-knit Brigantine community has grown closer following Hurricane Sandy, which affected many of those who live on the island. Auction donations have been pouring in for the benefit, as has support from friends and neighbors such as Maria Polillo.
Polillo has been making the rounds to area businesses requesting items for auction. While she lost her home in the storm as well, she said she still only knows a fraction of what the DiSantos have gone through and can't think of anyone more deserving of relief.
"They're great people," Polillo said. "They're hard working, and they don't catch a break. You see that, and if you have a heart, you can't help but help."
For more information about Lauren, visit caringbridge.org/visit/michelledisanto.
Contact Braden Campbell:
If you go
What: Benefit dinner for Lauren DiSanto
When: 4-8 p.m. Sept. 29
Where: Clancy's By the Bay, 101 E. Maryland Ave., Somers Point
How much: $25 adults, $8 kids
More info: Call Michelle at 609-839-4196