WEST VALLEY CITY, Utah (ABC4) – September is Childhood Cancer Awareness Month, and for one family in West Valley City, it couldn’t be more painful.

ZoeJane Betker lost her long battle with a rare brain cancer last week, and while it is painful for her loved ones, they want to make sure others know about Zoe and raise awareness about the form of cancer she fought so valiantly.

Zoe was diagnosed with a rare form of pediatric brain stem cancer known as DIPG, when she was seven years old. She started having strange symptoms on Christmas Day 2017. She reported seeing double and started throwing up after a nap.

“She was given a six to nine-month life expectancy. At that time they told us, told her, to go ahead and go home and just make memories because there’s no treatment currently available for DIPG,” Haroldsen said.

Zoe’s tumor shrank following her first radiation session and she joined a clinical trial at NYU, flying in and out for treatment. She overcame the odds she was given and fought bravely for more than five years before passing away last Thursday at 13 years old.

She remained stable until October 2022 when the tumor began to regrow. Following that they tried some alternate treatment and Zoe went through three more rounds of radiation. Her 4th round was completed the week before she passed and we were told she was one of the first pediatric patients they knew of to endure so many in Utah.

Elizabeth Haroldsen, a close family friend who is acting as the family’s representative, shared that Zoe had an immense love for life and earned her moniker Sweet ZoeJane. The name is emblazoned across countless t-shirts worn by friends and family.

“We’re just very grateful for the time we had with her,” Haroldsen shared.

Zoe’s loved ones shared that she enjoyed music and dance, and had an innate ability to connect with others. They say Zoe loved holidays, especially Christmas, and asked to celebrate it early this year towards the end of her life.

“If you were to describe Zoe, one of the first things that would come to mind is sass,” said Haroldsen. “Zoe had one of those personalities that was just larger than life.”

They want other families to know the symptoms of DIPG to look out for – such as double vision, throwing up, and left-side or right-side weakness. For Zoe, the disease affected her ability to walk, talk, taste, and see normally.

Her family says Zoe inspired countless others, traveling and sharing her story to raise awareness for DIPG which they will continue to do in her honor.

“We would want to share, during this Childhood Awareness for Cancer Month, that less than 4% of federal funding goes towards pediatric cancer and less than that for rare pediatric cancer. The innovations that are being made in this area with these new types of therapies are amazing,” reports Haroldsen. “And it would take a village to continue to wrap their arms around these children and provide the understanding, awareness, and funding that’s needed to continue towards the cure. And we know that Zoe will continue to work towards that purpose from her heavenly home, as we will continue to work for that purpose with the community and guard her legacy.”

Just weeks before her death, ZoeJane was invited to speak at Curefest in Washington D.C. where the families of DIPG and other forms of cancer gather to honor the fight for pediatric cancer awareness. Her message of hope and courage “conveyed her love of life and desire to experience the things that other children experience in life.” She passed away the week she was to deliver her speech.

Here is the statement she was going to give:

Good morning. My name is ZoeJane Betker. I was asked to speak here and talk about my experience and what my battle has been like. On December 29th, 2017, I was diagnosed with DIPG. I can’t exactly tell you every detail because I was so little. But I remember how I felt. It was devastated and something no 7-year-old should have to go through. I was given 6-9 months to live and I’m very grateful to stand here today 5 1/2 years later and share my experience with all of you. I started my first round of radiation in 2018 and then I started on the ONC201 trial. My tumor shrunk and then stayed stable for four years. In October of last year, my tumor started to show growth and we decided to do a second round of radiation. It showed shrinkage and then my next MRI showed growth again, so I ended up doing a third round of radiation. There is so much I want to experience in life that everyone gets to experience, such as having a boyfriend, going to college, having my own baby and getting married, and I shouldn’t have to worry about never getting to experience those things. I also want to experience being in the pit at a Harry Styles concert or better, getting to meet him one day. But you know, it is what it is. DIPG took away my ability to walk normally, talk normally, taste right, and see normally, it hasn’t taken away my ability to live my life yet and I am very grateful for that. DIPG makes life very unfair. There’s so much stuff that I want to do such as go to school, dance and just do normal things that a teenager should be able to do and DIPG prevents me from doing it all.

ZoeJane Betker

As a final act of love and hope, Zoe’s family said her tumor has been donated to further research towards DIPG.

The family will be running future fundraisers and events on behalf of Zoe through her Facebook page. A memorial fund was also created on GoFundMe for those who would like to donate to help the family.