Family-fun day sheds light on rare cancer

Stocks of Local Interest
April 28, 2010
"Lisa Sings Lee" (New Orleans)
April 30, 2010

With live music, face painting, food, games and more, the first “Ali” Gator Fun Day promises loads of enjoyment for the entire family. For many of the attendees this sprightly springtime event will also carry a bittersweet undertone.

Scheduled for Saturday, May 15, at Lake End Park in Morgan City, the day of fun and fundraising is sponsored by the Childhood Brain Tumor Foundation (CBTF) in Germantown, Md. The impetus for this event is the story of a little girl from Morgan City, Ali Rose Aucoin, who succumbed to a rare brain tumor at age 4.



On Dec. 27, 2007, Ali was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), an inoperable brain tumor located on the pons (middle) of the brainstem. Radiation bought a little time but no cure, and she died less than a year later on Nov. 2, 2008.



“DIPG slowly robs children of their motor functions resulting in partial paralysis, loss of voice and sight, and finally ending with an inability to eat and breathe,” said Donnasue Peveto, local contact for CBTF and close family friend of the Aucoins. “The medium survival rate is approximately 9 to 10 months and it’s 100 percent fatal.”

Channeling their grief into something purposeful, Ali’s parents, Jarrod Aucoin and Spring Rink Aucoin, have already donated nearly $25,000 to DIPG research in Ali’s name.



With “Ali” Gator Fun Day, Spring hopes to raise even more money to help find a cure for this disease in honor of her “Fallen Angel,” a special nickname given to children who have died from this rare cancer.



“She works tirelessly to try to ensure that no other family has to bury a child because of this disease,” said Peveto, who is also Spring’s neighbor. “After Ali’s diagnosis and her eventual death, she wanted something to be left as Ali’s legacy. We’re hoping to make this an annual event.”

According to Peveto, the community has really come together to help ensure the success of this fundraiser.



“It’s absolutely amazing the response we have gotten with people donating services and people donating items,” she explained. “We cannot thank everyone enough.”

In addition to food, live bands, original T-shirts, children’s activities, competitive games, a dunking tank and small amusement rides, there will also be a poker run, live auction and raffle. Gray brain cancer awareness ribbons and bracelets will be available, along with educational information about the disease. All of the money raised at the event will go to DIPG research in Ali’s name.

“The CBTF is sending a group of people to our area for that day to help put on the event and to ensure people that every penny that they donate will go to that research,” Peveto said.

Ali’s physician from Children’s Hospital is also making an appearance to talk about Ali and her illness and to discuss the importance of the research.

According to Peveto, of the 3,000 children diagnosed annually in the United States with brain tumors, 250 have DIPG. As rare as the disease is, three children in the Tri-parish area have died from the cancer.

“On the day of the event, we are going to invite the parents of fallen angels and of children that are suffering. We are going to try and get together a memory board so people can put faces to the names and faces to the cause,” the CBTF contact said.

“The main goal is just getting [information] out there so that everybody can be aware that there are children in our area suffering from this disease,” Peveto continued. “It’s a death sentence. There is no hope for parents with children who are diagnosed with this. Like Spring has told me, you have to try to cram an entire lifetime into just 9 to 10 months.”

In late April, the Tri-city mayors proclaimed May 15th as “Ali” Gator Day for brain tumor awareness.

For more information, call Peveto at (985) 397-3729. To donate in Ali’s name, go to firstgiving.com/springaucoin1 and click on the “Give Now” link.