The Children's Tumor Foundation
11/14/2025 | Press release | Distributed by Public on 11/14/2025 09:54
Story of NF: Ava S.
Story of NF: Ava S.
November 14, 2025NF1, Story of NF
No Comments
This story was submitted by Renee, Ava's mother.
I have suspicions that Ava may have NF when she was less than one year old (cafe au lait spots, large head). I brought it up to my doctor, and she told me she didn't agree. I ended up bringing Ava to the emergency when she was 11 months old due to bronchitis. I spoke to the pediatric doctor on call and asked if I should pursue genetic testing for NF1. She advised me to make another appointment with my doctor and not to take no for an answer. That's what I did. My family doctor finally agreed to send Ava to a specialist for genetic testing.A woman with wavy brown hair and a nose piercing is smiling in a closet filled with hanging clothes. She is wearing a pink hoodie and a black vest.
I was eight months pregnant with my second daughter when Ava's testing came back positive for NF1. Doctors ordered an MRI of her brain right away, and they called me days later to say Ava had a tumor that wrapped around both optic nerves and required chemo to stabilize it and preserve her vision. They wanted us to wait three weeks to meet with the oncologist and come up with a plan of care. That timeline was not okay with me, and I demanded to see them sooner. Thankfully, we had an appointment two days later, Ava's port was inserted, and chemo began less than a week later. Ava had chemo weekly for 70 weeks. Doctors were able to preserve vision in her right eye; however, all vision was lost in her left eye.
Shortly after Ava's port was removed (1.5 years after chemo stopped), she had five grand mal seizures, was unresponsive, and was in a drug-induced coma for a week while doctors tried to figure out why she was having seizures and how to get them to stop. She underwent many tests, and all of them came back clear. After a week, they took her off the medication, and Ava woke up like nothing had happened.
Ava still has her brain tumor, as it's inoperable. She has tumors around her organs, one growing by her spine, she's developing scoliosis, and has a large plexiform fibroma on her leg that causes pain. Ava is my hero because she doesn't let NF hold her back, she's never asked 'why me' or really ever complained.Two women drop the puck for a ceremonial faceoff between players from opposing hockey teams on an ice rink, with spectators in the background.
(Her defining moment was) was starting to volunteer for the Canadian Cancer Society, and being a storyteller has helped Ava through her journey. She wants to help other children/teenagers who have NF or are going through treatment for Cancer. She volunteers for the Youth Troop with the CCS. I , her Mom, am an ACT Lead volunteer with the CCS, and Ava and I will be heading to Ottawa for our yearly Summit and Day on the Hill, where we meet with federal government officials to make cancer care better for Canadians.
Ava is an amazing teenager. Extremely responsible, a great student, and friend. She enjoys volleyball, cooking, and baking. When she's not spending time with her friends, she's taking our pups for walks or working with us when we need help with our small businesses. Animals and shopping make Ava happy!
Favorite Song
Just the Way You Are by Bruno Mars
Dream Superpower
Time travel
Favorite Food
Chicken birria tacos
Fun Fact
Ava is a really good cook!
The Children's Tumor Foundation published this content on November 14, 2025, and is solely responsible for the information contained herein. Distributed via Public Technologies (PUBT), unedited and unaltered, on November 14, 2025 at 15:54 UTC. If you believe the information included in the content is inaccurate or outdated and requires editing or removal, please contact us at [email protected]