The Perfect Rose

“When I went to the hospital on September 4 th I would never have known what was to happen in the weeks to come. They diagnosed me with cancer and it didn’t really hit me at first, but my life would dramatically change. I never really thought of the concept of dying because I knew that if I contemplated it for too long then I would become depressed about it. I knew that I needed to keep my state of mind happy if I was going to pull through it. Now I know all the power one can possess if he or she can really feel the spirit.” Alicia Rose DiNatale wrote this letter in December 2001. Alicia died ten months later from a rare form of cancer. She was 17.

Alicia’s spirit and the strength she drew from her spirit continue on today through her family and friends and The Alicia Rose “Victorious” Foundation. Alicia spent long periods of time at the Children’s Hospital of Philadelphia. She found there was nothing for the teenagers to do during their hospitalization and most of them stayed in their rooms. The only place to go within the hospital was a room for much younger children. Alicia wanted a place for her parents and friends to hang out. She also thought of different ideas to rouse the teens from their rooms and make their days brighter. Thus, The Alicia Rose “Victorious” Foundation was born. Alicia’s parents, Gisele and Mario DiNatale, along with her brothers, Sebastion and Gabriel, created the Foundation to raise money to build teen centers in children’s hospitals. “Even in her darkest days, Alicia had a need to do something for others ‘to make their day a little better,’” Mario said quoting his daughter.

The DiNatales have lived in Voorhees, New Jersey for 20 years. During Alicia’s sickness and after her death, their family, friends and community rallied around them. In order to raise money for the teen rooms, they organized a “Birthday Bash” for what would have been Alicia’s 18 th birthday. Over 20 volunteers banded together to plan a party with 510 guests, a sit-down dinner, music, a silent auction, a live auction and many fabulous prizes. The event raised $80,000. Each teen room costs $21,000 to build.

On October 15, 2004, the second annual Birthday Bash was held at Lucien’s Manor in Berlin, New Jersey. Almost 540 tickets were sold with 440 attendees and 40 volunteers for the night. This year $100,000 was raised. The foundation received its first corporate grant from Bristol-Meyers Squibb Company for $21,500 with the help of Jay Sherbine, Ph.D. Dr. Sherbine is a scientist at Bristol-Meyers and a good friend of the DiNatale’s. The money funded the next teen center at The Cancer Institute of New Jersey in New Brunswick.

As a result of the Birthday Bash and other fundraising events, the foundation also sponsored teen rooms at CHOP, Memorial Sloan-Kettering Cancer Center and Children’s National Medical Center, D.C. Plans for the next teen centers are underway at A.I. duPont Hospital For Children in Delaware, St. Barnabus Medical Center and Hackensack University Medical Center, both in New Jersey, and City of Hope National Medical Center, Los Angeles, California. “My goal is to have a teen center in every pediatric hospital in the United States,” says Mario DiNatale.

Assemblyman Louis D. Greenwald, Chairman of the Budget Committee in New Jersey was the keynote speaker for the event. Lou spoke eloquently of the atmosphere and sentiments of the evening. “To me the message of Alicia’s life is how significant each of us are in the lives of others. Alicia was a little girl who I never met and may not have met if she were still alive. But the spirit of her life has had a ripple effect across this state and ultimately will touch every state in the country through the teen centers. The spirit of her life is to live life to the fullest. Somewhere a child with cancer will be able to get out of bed in a hospital and laugh and have fun in a teen center named after Alicia Rose. They will have a better day because of her and her spirit will live on.”

Lou’s office, Remington and Vernick Engineers holds an annual charity-bowling tournament and this year they have pledged $20,000 to the Alicia Rose “Victorious” Foundation. And so, another teen center will be built.

The teen rooms are fully loaded with large plasma televisions with surround sound, DVD players equipped with over 100 movies, CD players, some with a private listening booth, computers with Internet access, video arcade games, fun furniture such as bean bags, and some centers have a library. Nurses at CHOP told the DiNatales that before the teen room was built they could not get the teens to come out from under their covers because they were so depressed. Now, they cannot get them out of the teen rooms. Also, Gisele DiNatale delivers Teen Kits to the kids at CHOP. The kits are filled with items such as AT& T phone cards, fiber optic lights, flashlights, journals and pens, hand-held games, socks, and bath and body products. All of these fun-filled items have brought smiles on the teens’ faces.

The Foundation sponsors various other fundraising events. One that is very close to the hearts of the DiNatales as well as the Voorhees community is Bandana Day. During the course of her illness, Alicia had to wear bandanas to hide her hair loss from the cancer treatments. She had a distressful day at school on one of the rare days she attended that year. She was asked to remove her bandana by a few teachers who were unaware of her condition. She was devastated and humiliated. After she died, her grief-stricken friends started Bandana Day to bring student awareness of what it is like to be a teen with cancer.

Bandana Day takes place during one week of the school year and students may donate $2.00 per bandana. On the Friday of that week all students wear their bandanas. “Some kids wore them on their heads, some as a belt or a ponytail holder, and others put them on their backpacks. All children from 1 st to 5 th grade had a great time buying the bandanas and wearing them,” said two teachers at the E.T. Hamilton Elementary School in Voorhees. This year Bandana Day will be celebrated in schools in Cherry Hill, Pennsauken, and Haddonfield. Also, Rutgers University, New Brunswick will sponsor Bandana Day. The Foundation envisions schools across the country participating in this important fundraiser.

The DiNatales through The Alicia Rose “Victorious” Foundation want to share the spirit of a very brave and very wise young girl. Alicia, until the end of her life, embraced every day she lived. As usual, The Foundation wants to give the last word to Alicia, “ now I focus more on what I can do to make my day worth living. Making someone else’s day a little better can make the biggest difference because you’re doing something relevant.”