The life and legacy of Alicia Rose

By Terri Akman

Alicia Rose DiNatale lived every moment of her 17 years, inspiring everyone she met along the way. Even when she was diagnosed with cancer that was nearly impossible to cure, she found ways to touch others to make their lives better.

Although Alicia passed away in 2002, her legacy is alive and well. Through her memory, the Alicia Rose Victorious Foundation continues to help others in her name.

Throughout her life, Alicia’s beauty radiated on the outside, but it was her inner beauty for which she is most remembered, friends say. She came from a close-knit Italian family, with her father Mario and mother Gisele, and two younger brothers, Sebastian and Gabriel. Her family remembers her as a popular, fun-loving person who attracted friends wherever she went.

A gifted athlete, Alicia excelled in track and soccer, and used her fearlessness and determination to succeed in everything she attempted. She was active in school and church, and many Voorhees residents recall her wonderful performance as Tiger Lily in the community theater play Peter Pan.

“She was Tiger Lily in real life,” Gisele said. “That’s probably a perfect example of what Alicia was, filled with energy and spirit and not a lot of fear. She was stubborn and good-hearted, just like, ‘let me take on the bad guys — I can do this,’ all 98 pounds of her! She was creative and very talented in music. All three kids took piano lessons early on and she caught on famously. When it was time to choose an instrument in elementary school, she chose the violin, and I remember getting a phone call from her teacher who said that Alicia was a natural. She really embraced all of the arts and musical theater. If there was ever a perfect role model for a sibling, this was it.”

The DiNatale kids were always close, and Alicia set a strong example for her brothers.

“Alicia was definitely my closest friend growing up and there was a very strong brother-sister relationship from the get-go,” remembers Sebastian, now 20 years old and a junior at Gettysburg College. “She was three years older than me, but I would say that even if she was my age or younger, she still could beat me up! Alicia was able to put me in my place at times just by brute force. She was very athletic and strong all throughout her life.”

Gabe, Alicia’s youngest brother by six years and now a 17-year-old junior at Eastern High School in Voorhees, was only 10 when his big sister died. He remembered how active she was and how she constantly dragged her brothers outside to play.

“She always wanted to do something active. She was a pretty typical teen who was always very outgoing and happy. She really valued her social life. She was a great sister who always looked out for me and Seb. She was very protective and very caring of us and my parents.”

Alicia was also a daddy’s girl who had a special bond with her father.

“She was a very interesting child,” Mario said. “She needed attention from day one. She had to be with you at all times, even as a baby, and if she wasn’t, she let you know it. Like most Italian dads, I spoiled her. She was just a lot of fun to be around.”

Alicia was well known for her compassion: “There would have been no doubt that her career path would have followed something in social services, maybe a lawyer because she could have litigated, but she would have been working for the indigent,” Gisele said. “She would have helped the downtrodden.”

Sadly, Alicia never got that chance. In the summer of 2001, Alicia began feeling tired, achy and felt that things were not right. After fainting on the boardwalk in Rehoboth Beach, Del., her parents took her to the hospital. Doctors discovered fluid around her lungs and enlarged lymph nodes. On the first day of school her sophomore year in high school, she was admitted to the Children’s Hospital in Philadelphia, where she would spend most of that year fighting for her life.

Alicia was diagnosed with adenocarcinoma of unknown primary site. While adenocarcinoma itself isn’t rare, when the origination site cannot be determined, there is no roadmap for treatment. It is an adult disease that afflicts only about five kids per year in the U.S., Mario said. Given a 1 percent chance of survival, the DiNatales fought and gathered experts in the field whose treatment was, at first, successful.

“Her cancer actually started to diminish,” Mario remembered. “Her tubes finally came out, her fluid wasn’t building up, she was stronger and we went on a Make-a-Wish cruise. They said it was killing 98 percent of the cancer, but that 2 percent that was getting through was the part they were worried about. That was becoming more resilient to the chemos and would ultimately catch up. They were right. Just before we went on the cruise, she started building fluid up again and the chemo stopped working. But, for a while it did, and she was able to get a few good months.”

Alicia was in and out of the hospital for 13 months. Nevertheless, she insisted on home schooling so she could complete her sophomore year. Her class schedule included honors courses and a gifted and talented class, and she completed every assignment. She even had a role in the school play, Into the Woods, attended Homecoming and got her driver’s permit.

“She lived her life every day,” Gisele said. “She never once talked about dying.” Though the doctors advised Mario and Gisele to tell Alicia she was dying, they refused.

“I wanted her to be as happy as she could over the year, because I still believed to the very end that there could be a miracle,” Mario added. “We didn’t tell the boys that they told us from day one that it was terminal and there was no chance for survival.”

Even while in the hospital, Alicia continued to spread joy to others. She played with the younger kids and became friends with other teens. She took part in every activity available to her and encouraged other kids to do the same.

“Once, she and a friend both ended up in emergency critical care,” Gisele remembered. “She was in one room and he was in another and she said, ‘tell Jordan to e-mail me.’ I said, he can’t, he’s got the IV around his hand. Alicia said, ‘tell him to put the pencil in his mouth to hit the keys.’ She was just a trooper, believing ‘let’s just go and get things done.’”

Alicia’s brothers visited her regularly in the hospital and never gave up hope that she would pull through. “Usually, you’d see teenagers in their rooms with nothing to do, but my sister would get bored and always try to keep busy,” Gabe said. “She never appeared weak — not once. She taught me to never, ever quit and always be optimistic and positive in everything I do.”

Alicia and her family received support from the teachers and peers at Eastern High School. The school even closed for her funeral to allow students and staff to attend.

However, Alicia did have one very difficult incident in school. According to Gisele, one of the few days Alicia was able to get to school, she wore a bandana to cover her head that was bald from chemotherapy. Gisele remembered that the bandana matched her adorable outfit and she had her nails done, wore make-up and looked beautiful.

“Four teachers in the high school stopped her and told her to take the bandana off, that she wasn’t allowed to wear it,” Gisele recalled. “By the fourth one, she and her friend actually laughed and her friend said, ‘don’t you know she has cancer?’ The teacher said, ‘you know you shouldn’t kid around about that.”

From that story came the first of many Bandana Days, special days when students are encouraged to wear bandanas, paying $1 for the privilege. The fund raiser helps raise awareness about cancer and collects funds for Alicia’s foundation and its works in helping other teens live a normal life while in the hospital.

The family devised the foundation in the car on the way to funeral home, Gisele said. “We knew that we were going to have to write an obituary and we knew we didn’t want flowers. Our community was amazing. In those 13 months, I didn’t cook one meal for my family. I would come home from the hospital and there would be vacuum marks on my carpet and I didn’t know how they got there. It was just 13 months of loving someone so hard and being loved by a community of people that was pretty astounding. All we could think of was that we didn’t need anything from anybody. They had already done everything they could do. We wanted to find a way to thank them and make something good out of this.”

That was the birth of ARVF. When Alicia was in CHOP, she noticed there was a place for little kids to watch TV or color, with tiny chairs and cartoon character decorations. Yet, there was no place for teens who often spent countless hours alone in their rooms. She wished there was a space for teens to surf the Internet, watch movies and hang out with friends.

And her parents fulfilled that wish for others. The foundation’s first mission was to create such a place in CHOP, the first of almost 50 such Teen Lounges throughout the country to date, equipped with computers, movies, video games and a space to socialize. With the help of hospital staff, many young patients can take part in pizza parties, movie nights and other events.

There are now Teen Lounges in hospitals in every corner of the United States, from Boston to Seattle to Miami to Texas and many places in between. Teens are able to find relief from the stress of treatment while spending time with friends and family in a comfortable environment. In addition to building Teen Lounges, ARVF distributes about 2,000 kits each year to teen patients, filled with basic necessities, including phone cards, journals, toothbrushes, playing cards, gum and other comfort items. The foundation also sews oversized pillows made out of bandanas, and sends them to hospitalized teens, with kids as far away as Honolulu receiving them.

While taking on such an endeavor so soon after their daughter’s death was difficult, the DiNatales felt Alicia’s guiding hand. It was rewarding to see how much their work helped other teenagers, as Alicia would have wanted.

“It allowed us to channel a lot of our emotion into a more positive direction instead of just crawling into a hole,” Mario said. “By developing this room and this foundation, it kept her memory alive.”

The foundation has been hugely successful with the support of the community. Fund raisers include an annual Birthday Bash, wine tasting events, pizza nights, golf outings and bowling tournaments. This year’s 6th annual Birthday Bash dinner dance and auction had the special distinction of being held on Oct. 6, Alicia’s birthday.

While it is difficult to grieve publicly, “it has to be public because in order for us to raise the funds and bring awareness to it, people need to see what we saw, feel what we felt and hear what we heard,” Mario said. “The only way to do that is to get out and tell people about it. It’s a necessary evil.”

“The most satisfying part of this foundation is walking into a hospital and seeing a sick kid doing something that has nothing to do with their sickness and everything to do with what they are supposed to be doing,” Gisele said.

Alicia was remarkable until the very end. “She did more in her 17 years than many people I see at 80 or 90 who die,” said Gisele. “She wasn’t larger than life, she just, in her small way, made a difference.”