COLUMBIA, Miss (WHPM-TV)- A Columbia mom soon heads to Washington to advocate for childhood cancer research.
In the final moments of her life, gentry’s breathing became shallow, her chest slowing its rhythmic rise and fall.
“We met with her doctors, we had called her oncologist and she was just a sick little girl and she passed away the next afternoon,” said St. Baldrick's Advocate Amy Terrell.
Two loving parents stood strong by her side as a brain tumor, Diffuse Intrinsic Pontine Glioma, took their daughters life at just five years old.
According to Boston Children's Cancer and Blood Disorders Center, DIPG accounts for 10 percent of all childhood central nervous system tumors. Approximately 300 children in the U.S. are diagnosed with DIPG each year. While DIPGs are usually diagnosed when children are between the ages of 5 and 9, they can occur at any age in childhood.
Terrell decided to do all of Gentry's favorite things in the last months of her life.
"We eventually made the very hard decision to go for quality of life over quantity, so we did everything she wanted to do," said Terrell.
But in their loss, Amy Terrell found a purpose through the 46 mamas of St Baldrick’s foundation.
“A mom just reached out on Facebook and said hey I’m apart of St. Baldrick’s organization and she said we really would like a Mississippi mom there’s no Mississippi representatives, please consider,” said Terrell.
Amy Terrell found herself in a supportive group of mamas with a purpose who constantly fight the same battle.
The 46 Mommas, apart of St. Baldrick's Foundation is an advocacy group full of mother's who have and have had children with cancer.
The group is committed to supporting and advocating for childhood cancer research and giving survivors long and healthy lives.
The volunteer and donor powered charity inspired Terrell to shave her head in honor of her Gentry.
“I think that shaving my head for other moms is empowering, not just something that I’m doing to say hey look at me, but for other people to say wow that’s what it takes to step up and just be that person for my kid,” said Terrell.
Mothers are taking their support to the capitol and stand before congress to advocate a grant used for childhood cancer research.
“The Star Act passed last year and its up for appropriations again this year, and we hope for it to be fully funded and it has a long title, but that title is about survivor ship and treatment and actively better research treatments for our kids," said Terrell.
Terrell says medications from Diffuse Intrinsic Pontine Glioma (DIPG) treatment like steroids causes the body to swell.
“The physical change in just a few months is unreal, which is a fueling factor for St. Baldrick’s and research for safer treatments to keep our kids healthier longer," said Terrell.
The St. Baldrick’s Foundation is the largest private funder of childhood cancer research grants worldwide.
To donate to the St. Baldrick's Foundation visit https://www.stbaldricks.org/donate.
If you are the mother of a child who has or had cancer, and you would like to be a part of the 2019 team, email email@example.com for an application.