Anne Castaldo lay in the bed in her hospital room where she had back surgery on July 11,2009, when her son, Tony Brown, 24, a daredevil into extreme sports with a passion for film, walked in wearing his own gown. Brown was being treated for the blood disorder TTP. Castaldo was going to go home that night and Brown, who was doing well, was scheduled to check out the next morning.
"We took a picture," Castaldo recalled, sitting at the dining room table of her Monroe Turnpike home Monday morning. "I said, 'How many times are a mother and son in the hospital together wearing gowns?' He went upstairs with his two brothers to get sandwiches — and that's when it happened."
Brown started to feel ill and died in the hospital that night. He was only a month away from graduating from Full Sail University, a film school in Winter Park, Fla.
Castaldo and her husband Jeff, who she met when Tony was just seven-years-old, were filled with grief at their family's sudden loss.
"At first I researched everything online," Anne Castaldo said. "Honestly, you feel like you're going crazy."
She stumbled upon The Compassionate Friends website, a support group for parents who lost a child, and said it helped to pull her out of her depression. Castaldo was moved to make something positive out of her family tragedy.
She went on to start the Tony Brown Foundation to provide events for grieving parents and to award scholarships to Full Sail University to Masuk High School students who want to study film.
A cocktail reception will be held at Roberto's Restaurant from 5 to 8 p.m. on June 5 to raise money for the first scholarship. Tickets cost $45 and may be purchased by visiting the website thetonybrownfoundation.org.
The evening will feature Frank Mastrone, a Broadway star and Monroe native, who will perform music and tell stories, and Anna Raimondi, a radio personality, author, grief counselor and spiritual healer.
All who attend will have the opportunity to win prizes in a raffle, including gift certificates to restaurants and for massages and pedicures.
"All are things that make you feel good," Anne said. "That's the goal of these prizes."
One top prize will be a weekend getaway to be determined and Anne said her foundation is trying to obtain tickets to a Broadway show.
"I want to keep Tony's memory alive," she said. "Everybody will move on. I want to remind people he had a life. He was going to make a difference and he can't, so I will."
One Mother's Day, Castaldo's family went to a Super Cross race — something Tony loved. Both sons, Daniel, 29, and David, 31, were able to work at it. And they visited the Grand Canyon. "I had a picture that Tony took [there]," Anne said.
Maybe there is another family that planned a trip to Disney World, something they did every year before their child died and now they can't afford to go, Anne thought.
"My huge goal for the foundation is to make it similar to Make-A-Wish," she said. "I hear stories so many times of people who can't afford a tombstone and it tears them apart. People could write to me and tell me something that would heal their heart and I would try to find a sponsor."
In addition to the cocktail reception, the Tony Brown Foundation will raise funds by hosting a Pampered Chef party and through sales of a cookbook entitled, "Recipes from Heaven."
"All of the recipes are from people in memory of someone they lost," Jeff explained.
Though Anne is excited about using proceeds from events to benefit aspiring film students and parents stricken by grief, she said "unfortunately," much of the initial money the Tony Brown Foundation raises will go toward the costs of its attaining nonprofit status.
She said it costs between $800 and $1,000 just to get assistance to fill out the paperwork, a $300 filing fee with the state and an $800 to $1,200 filing fee with the federal government.
A Fatal Condition
Jeff and Anne have sons Daniel and David, a daughter, Jaime, 32, and Tony.
Tony, a former Masuk High School student who loved playing lacrosse there, wanted to embark on a career filming extreme sports and was enrolled at Full Sail University.
"He found his niche," Anne said of Tony, whose biological father, Buddy Brown died five years ago. "He was very happy."
He also had a girlfriend of five years, Brenda Kerigan, who Anne said had become part of the family. "They were the perfect match," Jeff said with a smile.
But in January of 2009, Tony was found unconscious in his dorm room.
"He was a healthy kid," Anne said of her family's shock.
Doctors later found that Tony had TTP, a blood disorder in which the red blood cells fracture apart and attack organs.
"It shuts your body down. It's difficult for me to say it, but he was in a coma for three to four days," Anne said. "They didn't think he was going to live, but he survived it. They weren't sure if it would happen again."
Tony had an I.V. treatment at home for six weeks and slowly regained his memory. He went back to school in March and started feeling better in June.
"He made great progress," Anne said of her son. "He came home for the Fourth of July weekend. He went wake boarding, which is like snow boarding but behind a boat on Lake Zoar. That week we just hung out as a family."
But when Tony woke up on July 4, he had a seizure.
"They said it must be the TTP," Anne said of the doctors.
Tony was hospitalized for plasmapheresis a blood treatment therapy. "He had it done and he was ready to go home," Anne said.
"When he didn't feel good it would bring this on," she said of Tony's blood condition. "He would have to carry a syringe on him."
"If he only felt slightly off, to what you or me would be a 10 minute thing, could be life or death for him," Jeff said.
Like Wearing a Scarlet Letter
The Compassionate Friends organizes candlelight vigils and Anne called them to help set up a ceremony close to home. A candlelight vigil in Tony Brown's honor was held at Trumbull Library in 2009.
It was open to all parents who lost a child and a touching slideshow played to music throughout the event, showing photos of people's children who had died. About 40 people attended the ceremony and that number increased to 100 the next year.
Anne said businesses donating food at the last vigil were so generous that there was enough to feed 200 people. Among the caterers were Frattelo's Deli in Monroe, Fortuna's Deli in Westport, C.J.'s Deli in Fairfield, Giove's Pizza in Trumbull, Gregory's Pizza in Monroe and Luigi's Bakery in Trumbull.
There was also an Angel Tree for a giving program benefiting the Salvation Army, in which families donated Christmas gifts in memory of their child.
Anne went to her first Compassionate Friends meeting in January, then Jeff went.
"They have a big table and they go around. You can talk or you don't have to talk," Anne said. "Parents who lost their son to a heart attack must have talked a good 40 minutes. It was emotional. They needed that."
"It's a very good group," she said. "It's a group where you don't feel like you're being judged. It's like wearing a scarlet letter when you lose a child. People don't know whether to bring it up or how to act around you."
"One woman at Compassionate Friends was told at work, 'It's been six weeks. Get over it,'" Jeff recalled.
Anne said people tend to judge levels of grief, adding she could be fine while putting something away in her son's room one day and "have a melt down" the next.
When she got through the first year without her son and important dates like his birthday and holidays like Christmas, Thanksgiving and Mother's Day had gone by, Anne thought things would get easier. But it still stung after that.
"Compassionate Friends said the second and third year is hardest," said Anne, who initially thought her feelings weren't normal.
"It has changed my outlook on life," she said of losing a child. "I feel like the worst thing has already happened to me and everything else will be a piece of cake."
Pieces of Him
Everywhere one looks at the Castaldos' home, memories of Tony are easy to find, including a colorful mat beneath a flower pot on the dining room table.
"I made this out of Tony's T-shirts," Anne said. "He will always be at the table. I also made a scarf out of his shirts for Brenda."
A skateboard ramp Tony built when he was younger is still in the Castaldo's backyard. "I put a bench and a little memorial thing out there for him," Anne said.
Jeff, who lived on the property all of his life, used a piece of slate and carved an inscription about Tony on it in the playroom, then affixed it to a granite boulder found in his yard. They brought the memorial to their vacation spot in New York.
The plaque reads: "Tony, Our love for you is as strong as the mountains that surround this lake; and as sure as the wind, the sun, the rain and the snow are part of this place, so are our memories of you. March 9,1985 - July 11,2009."
Anne always keeps a candle lamp in Tony's bedroom lit. Some parts of the walls are full of photos of him, many with his brothers. In one, they have swimming noodles duct taped to a bike so they could do tricks safely while doing jumps into a lake.
Jeff laughed when he remembered how Tony's older brothers would try several times to do a trick, while Tony, who was a natural, would master it on the second try.
Photos of Tony in his football uniform and playing lacrosse are among the memories, as well as him skateboarding in his backyard and riding a dirt bike when he participated in BMX races in Trumbull.
In the most recent pictures, Tony has a big, bushy beard.
"When he started at Full Sail, he decided to grow a beard until he graduated," Anne recalled. "I hated it. It was terrible. On Mother's Day, before he passed away, he trimmed it way down. I was never so happy to see someone shave. His girlfriend later told me, 'You did know he did it for you?'"
Anne sat in front of her computer and gazed at she and Tony's last photo together. Tony leaned in next to his mother as she lay in her hospital bed, both wearing gowns and smiles from ear-to-ear.
"That's the story of us and my son," Anne said.