NF Stories - Izzy
Mike Flynn on His Daughter Izzy
What a journey with Izzy. Diagnosed with neurofibromatosis (NF) at seven, Izzy’s personality and traits have really evolved over the past ten years. Now 17, she’s incredibly direct and tough, both internally and externally. Yet, she has one of the biggest hearts of anyone I’ve ever met.
Dealing with NF is challenging, and it’s frustrating how many, including our medical community, often don’t know how to handle it. Watching Izzy face these challenges with such resilience is truly inspiring. I wish I could handle life as she does.
We first learned about CureNFwithJack around 2012. Our Cousin, Susie Flynn posted something on Facebook about NF, and we reached out. The Flynn family eventually introduced us to CureNFwithJack, and we've been connected ever since.
We stopped to visit the Burkes and swim at their neighborhood pool on our way to Illinois one year. During that visit, we got a call about a blockage found in Izzy’s routine MRI, requiring emergency brain surgery. Izzy was unfazed, ready to roll to Illinois to see her cousins as soon as it was over. Her courage and strength blew me away.
Izzy endured scoliosis for almost three years, wearing a brace 23 hours a day. Then we discovered a rapidly growing tumor on her brain stem. She spent around 40 days in the hospital preparing for back surgery. This long hospital stay in Atlanta, during COVID, was tough. My wife and I had to juggle time between the hospital, our other children, and lives our in Savannah. Despite this, Izzy was a trooper. She always wanted to help the other kids in the hospital, buying them gifts and lifting their spirits.
After her back surgery, a nurse told Izzy she could be released once she could walk up a flight of stairs. Within 14 hours, Izzy was up and walking. Her toughness amazes me to this day.
The hospital stay was a sobering reminder of life’s challenges. Meeting families who had been there for more than 200 days, sharing stories, and witnessing their resilience put things in perspective. Everyone has their own journey, and it's not about comparing who has it worse.
Izzy’s subsequent chemo regimen, with drugs similar to outdated breast cancer treatment, was brutal. I’m thankful for the advancements in NF research over the past decade but I hope they find treatments that are better than what Izzy and Jack have dealt with. This whole experience has motivated us to get involved in fundraising, aiming to support others who got the same news we did and are having similar challenges.
NF is a complex disease. Treatments that work for one person might not work for another, and even successful treatments can take a major toll on the body. Izzy’s attitude through all this is inspiring. Despite having gauze and tape on her toes due to infections or a huge scar on her back from surgery, she doesn’t let it control her.
Izzy will be on this journey of treatments and medications for the rest of her life—which is a frustrating part of NF. We need better answers and more effective treatments. Our goal is to see a new standard of care that works for everyone.
Izzy is a high school senior this year and looking into colleges. Inspired by two incredible nurses at Children's in Atlanta, she’s determined to pursue pediatric nursing.
This year was our inaugural "Swing with Izzy" event and we hope it becomes a can’t miss occasion. Every dollar we raised goes to CureNFwithJack, supporting their mission. I believe we will find a cure in our lifetime, and I can’t wait.
Izzy and Jack are at the age where they shy away from the spotlight, but their strength and determination inspire me every day. They've taught me a lot about life.
Mike Flynn
July, 2024
Do you, a family member, or friend live with NF? We would love to hear your story!