Cape Coral, FL (WFTX ) -- Chrissie Lograno Weinstein remembers her son Michael as the best hugger and her personal real-life Ernie from Sesame Street’s Bert and Ernie. She was Bert.
“I was his best friend, you know? We were always together,” she said.
Weinstein said doctors diagnosed Michael with brain and spinal cancer when he was two years old. After dozens of chemo treatments and 60+ surgeries, he died in 2015 when he was nine years old.
“He fought every minute, every second,” said Weinstein.
She said it took doctors three years to name the specific cancer Michael had because it was so rare. She also said if scientists had done more research on kids’ cancers and treatments, maybe her son would’ve lived longer.
“In most cases, these kids who are surviving five years or longer are facing such horrible health repercussions because of the treatments for the cancer,” she said.
So, she decided to join 46 Mommas, a group that represents the number of moms in the U.S.. who learn their child has cancer everyday. Every year they travel to Capitol Hill to raise money for St. Baldrick’s foundation - one of the nation’s biggest cancer research donors. Some even shave their heads to raise funds.
Weinstein won’t shave her head, because of Michael’s request when he was still living. Instead, she’ll ask lawmakers to fund the Survivorship Treatment Access and Research or STAR act which researches cancer treatments for kids.
“It’s so important to make sure that these kids have the chance to have a childhood and grow up,” she said.
Weinstein leaves for Capitol Hill first thing Saturday morning. She’ll meet with Congress Tuesday.
The-CNN-Wire™ & © 2019 Cable News Network, Inc., a Time Warner Company. All rights reserved.