Justin Bieber has helped bring a new wave of attention to rare form of childhood cancer Atypical Teratoid Rhabdoid Tumor, but for a group of local parents, the fight against AT-RT began nearly six years ago.
It has become a mission of this group of parents to help fund research and treatment options for this disease, a type of cancer rarely studied until a Dana-Farber expert started investigating it.
As Janet O’Shea watched the national news coverage of Avalanna Routh meeting Justin Bieber for a special one-on-one play date, she was ecstatic. O’Shea’s daughter Charlotte was diagnosed with AT-RT around the same time as Avalanna.
The O’Sheas and Rouths had gone through clinical trials, aggressive treatments, and relapses together. They, along with two other families with children with the disease, founded the Cure AT-RT foundation to raise money for research into this cancer.
The Pan-Mass Challenge has been the vehicle to raise a significant amount of money for Cure AT-RT, and ultimately improving treatment options for AT-RT patients.
In 2006, two-year-old Charlotte O’Shea was diagnosed with AT-RT. So were Avalanna Routh, Declan Rourke and Emily Mandell. There was no successful course of treatment. The average survival time from diagnosis is approximately 12 months, according to the National Cancer Institute. Fewer than 30 children are diagnosed with AT-RT in the U.S. each year.
“We were so lucky to find Mark Kieran,” O’Shea said.
Dr. Kieran is the Medical Director of Pediatric Neuro-Oncology at Dana-Farber. Dr. Kieran and DFCI researchers developed an intense multi-pronged therapy regimen in 2009 that extended the life for AT-RT patients and has cured a few children with the disease.
Charlotte, among the first patients to participate in clinical trials, lived four years after her diagnosis. She died in 2010. Emily died in 2009 and her father, Brian, rode the 2011 PMC in her memory.
Declan, 6, is now cancer-free. Avalanna continues her treatment. For their families, the mission to find a cure for AT-RT continues.
In 2011, O’Shea road in the Pan-Mass Challenge and will ride again in 2012 as a member of Team Lick Cancer. Much of the money the team raises supports the Cure AT-RT fund.
These children have been PMC pedal partners, inspiring riders to raise money to research and treat all kinds of cancers. Declan brought teary-eyed PMCers to their feet when he road his bike through the crowd during the PMC opening ceremony in Sturbridge last year at the conclusion of his father’s emotional speech.
To date, Cure AT-RT has raised more than $850,000. That money has allowed Dana-Farber to continue researching the cause of AT-RT and discover more effective treatments.
This week, as the nation watched a spunky six-year-old tussle Justin Bieber’s famous locks, the parents of AT-RT patients hope it serves as a reminder that childhood cancer deserves more attention.
“It was so perfect to see Avalanna have that experience. She is an incredibly special child who has made an enormous impact on so many people in her six years,” O’Shea said. “It’s also hard because I know how much Avalanna has gone through in her fight against this disease. There are no easy cures for pediatric cancer. We need to continue to fund research into pediatric cancer to find a cure.”
To support O’Shea and Team Lick Cancer in the Pan-Massachusetts Challenge, click here.