Kristyn Niederhaus’ arm is adorned with colorful tattoos and reminders of her daughter Brynnley. Brynnley Niederhaus fought a brave fight before dying from a rare brain tumor (DiPG) in November. Her parents are continuing the fight by highlighting her diagnosis and raising awareness for pediatric cancer. They’ve established a foundation in her honor to raise awareness and funding for DiPG research and childhood cancer in general. They have a number of events planned, including charity golf outing in August at Arrowhead Golf Course and a 5K run in September. Friday, July 1, 2022.
FOUNTAINTOWN — A Fountaintown couple knows their little girl Brynnley is smiling down on them from heaven, watching as they work diligently to help other families struggling with the same type of rare brain cancer that took her life last year.
It’s been seven months since the little girl known for her bright blue eyes and infectious laugh lost her battle with cancer at the age of 6.
Her parents, Scott and Kristyn Niederhaus, started the LiveLikeB Foundation to raise funds and promote research for Diffuse Intrinsic Pontine Glioma — or DIPG — which typically proves fatal within about nine months. Less than 2% of those with DIPG live more than two years.
About 300 children are diagnosed with it in the United States each year.
“It’s the rarest, fastest-growing kind of tumor in children,” said Kristyn.
For Brynnley, the diagnosis came in May 2020 after her family started noticing changes in her shortly after returning from a dream vacation to Key Largo with Brynnley and her sister Raegan, who is now 4.
Brynnley would live just 550 days after her initial diagnosis, passing away on Nov. 27, 2021.
Her family is determined to fight for a cure and to support other families who are battling the same dreadful disease.
The LiveLikeB Foundation has a number of fundraisers planned throughout the year, including a golf scramble and fun run.
“We hope to be able to help people who are struggling or going through a tough time financially like we have. We also hope to donate money for a cure to come along, so no other family has to go through what we did,” said Kristyn.
On June 22, Brynnley’s parents presented a check for $3,500 to a Columbus, Ind. family whose 4-year-old daughter is battling DIPG.
Brynnley’s father, Scott, knows all too well how much the money can help.
“I know they travel out of state for treatments like we did, and the cost of fuel alone is a lot,” said Scott, who made multiple trips to Nationwide Children’s Hospital in Columbus, Ohio for his daughter’s treatment.
He knows Brynnley would be proud of her family’s efforts to help others, and the foundation they started in her name.
“I know she would definitely be happy that we’re helping other folks that are in difficult situations,” he said. “She had a big heart and a big smile, and she always wanted to help anybody she could, even if it meant not helping herself.”
Even as they strive to promote research and support other families, Brynnley’s parents are struggling to pay back a mountain of debt that accumulated from their daughter’s care.
“We currently have a medical lawsuit filed against us because I wasn’t making a payment on it, so it’s been very hard. Just to bury her alone was $20,000,” said Brynnley’s mom.
A fundraiser called “Live Like B Day” was held last month at Veterans Memorial Park in Lawrence, where Brynnley played three seasons in the Oaklandon Youth Organization’s tee ball league, most recently playing for the Bandits in the spring of 2021.
“They retired her number so no other player will wear the No. 1,” said her mom.
Even though Brynnley’s brain tumor was progressing to the point she had no vision in one eye, she still managed to rely on the tee only rarely, hitting the ball pitched to her instead.
“She was very good. Her little sister plays now,” said Kristyn, who coaches her younger daughter’s team.
Losing Brynnley has been especially hard on 4-year-old Raegan, who worshiped her big sister.
“They were born two years apart and were best friends, so she’s having a really hard time with it,” said her mom.
“She asks a lot of questions that a 4-year-old shouldn’t have to ask, like why the tube (in her throat) couldn’t save her, or why we didn’t wake her up when we called 911.”
Kristyn said the family finds comfort in knowing they’re helping others through the LiveLikeB Foundation, even as they struggle to make ends meet and to carve out a new normal now that Brynnley’s gone.
Kristyn took a job as a special needs aide at Brandywine Elementary School, and Scott works as a loader for a wine and spirits company.
Even as they continue to pay back their medical bills, the couple is devoted to helping others and promoting research of the rare form of cancer that took their daughter’s life.
“The unfortunate thing about childhood cancer is it only receives 4% of government funding for research,” said Kristyn. “To put that into perspective, Americans will spend on Starbucks coffee in three days what the government spends in an entire year for funding on childhood cancer.”
In addition to supporting individual families, proceeds from the LiveLikeB Foundation will go to The Cure Starts Now. The grassroots fundraising effort is on a mission to eliminate all cancers, with a particular focus on children’s cancers, cancers that are immune to treatment and “those cancers that are the biggest bullies with the highest death rate.”
Paul Galbraith, Brynnley’s godfather and her dad’s longtime best friend, couldn’t be prouder of the family’s efforts to help others through the LiveLikeB Foundation.
“The foundation carries on Brynnley’s life and legacy,” he said. “Brynnley brought so much love and hope and laughter into everyone’s life, even throughout her battle with cancer, so I think this is a wonderful way for the family and everyone who loved Brynnley to continue spreading that love and hope and laughter to others.”
For more information, visit LiveLikeB.com.
