NORTHWEST, Ark. (FOX24) – Northwest Arkansas is going gold for pediatric cancer as part of this year’s 2019 Color of Hope gala.
It supports Arkansas Children’s Northwest, with 4-year-old Tori Johnson in the spotlight as this years champion child.
Chelsea Helms from our sister station FOX 24 is in the studio with how Tori’s journey with cancer is now being used to make the fundraising event a success.
The Johnson’s never imagined their baby girl would be diagnosed with brain cancer, let alone before her first birthday, but years later Tori is recovering and they’re using Tori’s diagnosis to show this can happen to any family.
Erin Johnson, Tori’s mom says, “time for us is everything”.
For the Johnson family, every moment of every day is priceless.
Tori’s mom says, “I think that’s part of what pediatric cancer does because it in a way puts a timeline on your child”.
At just 9 months old Erin Johnson’s daughter Tori was diagnosed with a rare form of cancer.
Johnson said, “the day she got sick we were just a normal northwest Arkansas family enjoying the area and life as normal and then it all got rocked within a couple of hours of waking up”.
Tori was taken to Arkansas Children’s Hospital in Little Rock where she had to have a tennis ball size tumor removed from her brain, followed by months of intensive treatment.
Erin remembers what was going through her mind during that time.
Johnson says, “I was just at the color of hope 2 months ago, we gave our donation and it was a great event to help, but I’m not supposed to be here”. “We give money for sick kids, my child can’t be the sick kid”.
It was a new reality that changed the meaning of time for the Johnson’s.
But now at 4-years-old Tori is cancer free, and the family is using their time to raise awareness and money for treatment for kids, like Tori.
Johnson says that it, “urges us more to give back so that we can help raise funds to get more education or more funding for research to try to find a cure”.
This year Tori is the 2019 Champion Child for Arkansas Children’s Northwest’s Color of Hope Gala, putting a face to pediatric cancer.
Mandy Macke the Chair of Color of Hope says “to understand the mission of a children’s hospital you really have to have some child to tie it to”.
Macke is the executive director of the Willard and Pat Walker Charitable Foundation and she has helped ensure the Walker’s legacy lives on within Arkansas Children’s Northwest.
She is also on the Arkansas Children’s Foundation Board, and this year she is the 2019 Color of Hope Chair, working alongside Tori to make the event a success.
Macke says that “Tori and I have done some food tastings, (cut out confusion) we’ve picked colors and we’ve picked the music, we’ve picked the theme obviously”.
The Theme? Go Gold for Pediatric Cancer, with the goal of raising enough funds to eventually create a hematology oncology department at ACNW.
Macke says that “there are currently at least 250 kids being treated in the state of Arkansas for cancer and 1/3 of those are here in Northwest Arkansas”.
Johnson said, “you don’t know how important care is, close to home until it’s your family that needs it”.
The Johnson’s know the value of time, and their using Tori’s experience to make sure that there is no time wasted when a child needs care.
Johnson said, “these are our babies, these are our future leaders, the people that are going to run the world and they can’t change the world unless they’re healthy”.
Tori still does have to be seen by doctors for about 8 hours of treatment a week, but as you can see it, Tori is thriving and loving life.