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St. Charles Parish family turning tragedy into advocacy about pediatric cancer

Amelia, 4, was diagnosed with a rare and aggressive brain cancer earlier this year

St. Charles Parish family turning tragedy into advocacy about pediatric cancer

Amelia, 4, was diagnosed with a rare and aggressive brain cancer earlier this year

OVER 15 MINUTES FROM NOW. THE CURRENT TIME IS 543, AND THIS MORNING A SAINT CHARLES PARISH MOTHER IS ON A MISSION TO RAISE AWARENESS ABOUT PEDIATRIC CANCER AND HOW LITTLE FUNDING THERE IS FOR IT. THIS, AFTER HER DAUGHTER RECEIVED A DEVASTATING CANCER DIAGNOSIS. BUT TODAY, FOUR YEAR OLD AMELIA FINISHES RADIATION, WHICH IS SHOWING SIGNS OF PROGRESS. I TALKED TO THE FAMILY ABOUT WHY THEY’RE REMAINING HOPEFUL DESPITE HEARTBREAK. DAY TO YOU. THIS IS AMELIA, A HAPPY AND SEEMINGLY HEALTHY GIRL CELEBRATING A FRIEND’S BIRTHDAY EARLIER THIS YEAR. FAST FORWARD JUST A FEW DAYS AND THIS IS ALSO AMELIA IN THE E.R. STRUGGLING TO WALK WITHOUT STUMBLING. IN MY HEAD, YOU KNOW, I’M LIKE, WELL, HE’S GOING TO BE AN INNER EAR ISSUE OR LIKE CHILD VERTIGO OR SOMETHING LIKE THAT. WHAT FOLLOWED IS A MOMENT EVERY MOM AND DAD DREADS. A TEAM OF DOCTORS ENTERED THEIR ROOM AT CHILDREN’S HOSPITAL, HAVING JUST PERFORMED AN MRI. MATT. FINALLY, HE WAS LIKE, IS THIS TERMINAL? AND WE DIDN’T EVEN KNOW WHAT IT WAS. WE DIDN’T EVEN KNOW IT WAS CANCER AT THAT POINT. BUT IT WAS FOUR YEAR OLD. AMELIA WAS DIAGNOSED WITH DIPG, AN INCREDIBLY RARE AND INCREDIBLY AGGRESSIVE FORM OF PEDIATRIC BRAIN CANCER WITH NO KNOWN CURE. THAT WAS FOR SURE THE WORST DAY OF MY LIFE. SUDDENLY, STEVENS WONDERED IF HER DAUGHTER WOULD EVER ATTEND ANOTHER SAINTS GAME OR STAND ON THE PARADE ROUTE. SHE THOUGHT BACK TO CHERISHED FAMILY MEMORIES AND WONDERED WHY US? BUT SOON SHE CHANNELED THAT PAIN INTO SOMETHING POSITIVE. DECIDING TO TURN TRAGEDY INTO ADVOCACY FOR HER DAUGHTER AND OTHER YOUNG CANCER PATIENTS. ONLY 4% OF WHAT IS DONATED TO CANCER RESEARCH IS ALLOCATED TO TO PEDIATRIC CANCER, A CLAIM SUPPORTED BY THE CHILDREN’S CANCER FOUNDATION. STEVENS SAYS SHE WILL KEEP SPEAKING OUT UNTIL THAT NUMBER GOES UP IN THE MEANTIME. SO I GREW UP IN SAINT CHARLES PARISH. SHE’S THANKFUL FOR HER COMMUNITY’S OUTPOURING OF SUPPORT AS SHE AND HER FAMILY HOLD ON TO HOPE THAT COULD BE INTUITION OR THAT COULD JUST HONESTLY BE DENIAL. I DON’T KNOW WHICH ONE, BUT IN MY GUT, I FEEL LIKE SHE’S GOT THIS. NOW, AMELIA AND HER PARENTS WILL TRAVEL TO MICHIGAN NEXT MONTH FOR SPECIAL MEDICATION. CURRENTLY IN STAGE THREE CLINICAL TRIALS. AND AS YOU CAN IMAGINE, THE FAMILY HAS A LOT OF UNEXPECTED EXPENSES AS A RESULT. IN TRUE LOUISIANA FASHION, FUNDRAISERS ARE POPPING UP LEFT AND RIGHT. TO HELP. TO LEARN MORE, YOU CAN HEAD TO OUR WEBSIT
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St. Charles Parish family turning tragedy into advocacy about pediatric cancer

Amelia, 4, was diagnosed with a rare and aggressive brain cancer earlier this year

A young girl from St. Charles Parish has been diagnosed with DIPG, a rare and aggressive form of brain cancer with no known cure.Amelia, 4, finishes up radiation on Thursday. In September, she will travel to Michigan with her family for specialized medicine, which they hope will slow her tumor's growth.Brittany Stevens, Amelia's mom, told WDSU she quickly learned no one will advocate for her daughter as much as she will. That is why the family decided to share their story."I had to do my research on everything, and when I tell you the research is so disheartening," said Stevens. "Only four percent of what is donated to cancer research is allocated to pediatric cancer, and that’s not brain cancer. That’s pediatric cancer as a whole."Stevens' claim is backed up by data compiled by the Children's Cancer Foundation. Her hope is by raising awareness, more money will be allocated to pediatric cancer research, specifically the kind her daughter has."This has been around, and there is not one, there is not one FDA treatment (for DIPG)," said Stevens.In true Louisiana fashion, there has been an outpouring of support for Amelia and her family in their time of need. Fundraisers are popping up across the New Orleans Metro area, including a trunk or treat event scheduled for Oct. 26 from 6-10 p.m. in Marrero. It is happening at 5131 Lapalco Blvd.The family is also accepting donations at this link.Stevens told WDSU she is holding out hope that her daughter can defeat cancer."That could be intuition, or that could just honestly be denial. I don’t know which one, but in my gut, I feel like she’s got this," said Stevens. "I will not stop giving up hope."

A young girl from St. Charles Parish has been diagnosed with DIPG, a rare and aggressive form of brain cancer with no known cure.

Amelia, 4, finishes up radiation on Thursday. In September, she will travel to Michigan with her family for specialized medicine, which they hope will slow her tumor's growth.

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Brittany Stevens, Amelia's mom, told WDSU she quickly learned no one will advocate for her daughter as much as she will. That is why the family decided to share their story.

"I had to do my research on everything, and when I tell you the research is so disheartening," said Stevens. "Only four percent of what is donated to cancer research is allocated to pediatric cancer, and that’s not brain cancer. That’s pediatric cancer as a whole."

Stevens' claim is backed up by data compiled by the Children's Cancer Foundation. Her hope is by raising awareness, more money will be allocated to pediatric cancer research, specifically the kind her daughter has.

"This has been around, and there is not one, there is not one FDA treatment (for DIPG)," said Stevens.

In true Louisiana fashion, there has been an outpouring of support for Amelia and her family in their time of need. Fundraisers are popping up across the New Orleans Metro area, including a trunk or treat event scheduled for Oct. 26 from 6-10 p.m. in Marrero. It is happening at 5131 Lapalco Blvd.

The family is also accepting donations at this link.

Stevens told WDSU she is holding out hope that her daughter can defeat cancer.

"That could be intuition, or that could just honestly be denial. I don’t know which one, but in my gut, I feel like she’s got this," said Stevens. "I will not stop giving up hope."