In June 2020, NF Endurance launched the End NF Challenge, a virtual fundraising running program to safely bring the NF community together, raise NF awareness, and raise some money for NF research. We asked Holly Griffin to share her story of NF and why she joined the challenge.
I was about 12 years old when I found out I had NF1. I honestly don’t remember much about it because my case was not that bad at the time. All I knew was I had to go to the hospital once a year to see Dr. Greenwood. I hated going because it made me feel like something was wrong with me, but I looked and felt normal. My parents did not talk to me much about it, nor tell me the effects it could have. So I knew very little of what NF was and how my life could look.
It was not until I got to high school when I started really seeing signs of NF that affected my body. I have a plexiform tumor on my right knee that is noticeable and being an active teen that was hard. I played soccer and danced and I felt like people just stared at me and would say, “Oh my gosh what happened to your knee.”
Then as I continued to get older, small neurofibromas started popping up on my body. I knew getting pregnant was a huge risk, but my husband at the time and I decided we really wanted kids so we went for it. My first pregnancy made the fibromas so much worse! That was very hard for me, but I was so thankful that our first child, my daughter, did not have NF.
We tried for a second baby, NF for me got worse again, and we had a boy, who did get NF1. It was at that point when my heart broke into a thousand pieces, because I felt like I just caused this sweet little baby a lifetime of problems. Fast forward to now, Hayes is 12. His only sign of NF for a long time was the bowing of the tibia. His leg broke four times, when he was 4,6, 9 and 10. His doctor at Duke is AMAZING and feels like family to us! He has always put Hayes’ best interest first. After the last break, we decided it was best to move forward with amputation. Hayes finally came to me and said, “Mom, I don’t want to go through this anymore, I am ready to amputate!” Hayes is the strongest, toughes
t, bravest kid you will ever meet! He knew his quality of life would be so much better as an amputee. He has a much better attitude than I ever had on NF. He had not been able to play sports like all his friends without the fear of his leg breaking. He played basketball last winter and gave it his all! You could see the joy all over his face, especially when he finally scored a basket at the final game. The entire gym stood up and screamed and cheered for him! Hayes has had a total of 12 surgeries in his 12 years of life. Amputee life has been pretty easy for Hayes. He adjusted so well and did not skip a beat. Two months after his surgery in December of 2020, he had his first leg and was ready to take off. It has its difficulties, adjusting the leg to make it pain free, but we stay connected with The Hanger who works on his leg to be sure we have it adjusted just right. Funny thing we have found out is to be careful in the sand at the beach. Hayes got his leg stuck on one time which made for a funny memory. Lessons learned being an amputee!
I got divorced in January 2017 and my NF has continued to get a little worse as I get older. Which was God’s way of blessing me in a way that I did not expect. I never thought I would have to be explaining NF to a “New” person in my life. Let me tell you that is not an easy thing. Not only is dating in your 40s hard but having to explain NF adds pressure, insecurities, and nerves. It is hard to be open and let someone in on that piece of your life! I had to have a lot of trust and faith! I ended up having surgery in September 2020 and had around 60 fibromas removed from my stomach, arms and chest and in December 2020 had my plexiform tumor debulked and more fibromas removed from my legs.
Before my divorce I was a stay-at-home mom, taught fitness for 8 years. However, after the divorce I went back to work full time. This is when running came into my life back in the beginning of 2017. I started running because I was angry, confused, and sad. It was my therapy of some sort. As the months rolled on I fell 100% in love with running and started signing up for races. First, I was like I am just going to do 5Ks. Then I said maybe I’ll try a 10K…and that is as far as I want to go. Then one day I said I am going for it! I am doing a half. I was not sure if I would even
finish, but I did. After my first half I just wanted more. I joined many of the local run groups, met a ton of new friends who accepted me and my NF, got involved in the local Fleet Feet training group and started really finding my passion in the sport of running! I also wanted to run for NF and that’s when I got involved with the NF Endurance team. I had been involved with the Walks but this was more my speed. Here I was signing up for a Half Marathon, many states away in Indianapolis! I was flying with my kiddos by myself, to go meet complete strangers and run a race with a bunch of people I did not know! LIFE CHANGING! Those people changed my life and I feel more connected than ever to the NF community! I will never forget this first experience with the NF Endurance Team! I even got a 5 minute PR at that race!
During covid running was a lifesaver for me. Running is the best thing during a pandemic because you can’t cancel running!! Right! It is awesome because you can run anytime, anywhere, and I still ran with my friends….just spread far apart. It kept me somewhat positive during such a hard time!
It has become “my thing” to do my big fundraising in the fall for a big race. First was Indy and then with the help, support and love from my fellow NF runners, I decided to try my first Full Marathon in Chicago of 2021. It was the most incredible experience. From the training, to lessons learned, to finding my dream coach who is also an amputee (that is for a whole other story to tell how lucky I got meeting him) to a perfect year of hard training season, to running those 26.2 miles in Chicago! Meeting friends like Sasha for the first time and running that race with her will forever be in my heart!
Currently I am fundraising for NY and have already passed my goal with more funds coming. Sadly I will not be able to run as I have torn my hamstring. I have been heart broken, but am blessed that CTF has kindly allowed me to defer to 2023. So as I won’t be running with my fellow NF Endurance runners, I will be in NY, attending all the events and cheering on every single one of the NY heros on the course! It will be fun to be on the other side of the race and I look forward to next year when I get to run NY!
My biggest supporters? 
First and foremost the new amazing guy in life that I met in June of 2021! I prayed for a long time for God to bring someone in my life who would accept me, for who I am, NF and all and Russ does that 100%. He makes me feel wanted, loved, cared for and makes me feel pretty, despite all what NF does to my body! He also supports my running. He is not a runner, but is by my side for most of my runs riding his bike alongside me, cheering me on, making sure I am ok! He makes me feel special every single day, and also supports me in all the fundraising I do for CTF!
My run friends! They know me best, they know Hayes, they see my struggles with NF, they hear my stories on runs and they love me through it! They support me and care for me! I never feel judged or different when I am running! I used a lot of social media on Facebook and Instagram to help me raise money and awareness. It again is hard to put yourself out there with all your insecurities, but it helps people understand what I go through and what Hayes goes through. I have found a network of friends, most I’ve never met, who I connect with and I hope that through my sharing of my journey, I can help others who struggle with something similar.
The best part of being so involved with CTF and the NF Endurance team, is showing Hayes that we can do hard things. That we will continue to support NF, raise money and awareness in the hopes that one day there will be a cure! Hayes and his best friend even did a fundraiser together and raised $500 for our team Hayes Smash NF! I want him to find that passion I have to be involved and create lasting relationships with our NF family!
I pray daily that there will be more treatments and a cure one day for NF. I have such a hard time loving myself, feeling good about my appearance and body image, and letting people into this very hard part of my life. I constantly worry about what I will look like in a year, 5 years, will people accept me? It is all so hard. I watch Hayes struggle with getting his leg adjusted just right, or when his leg is rubbing and causing pain. I worry if Hayes will develop the neurofibromas like I have.
I
PRAY! I pray a lot. I just think what if I did not have bumps on my body? Man I would feel so much prettier, I would feel so much more confident, I could run in a sports bra and shorts on a hot day, I might even wear a bikini. Even though I have an amazing person in my life, those insecurities are still there.
I have had so many setbacks in my running career, because of injuries or NF related, but like I always say:
With every setback there is a comeback…..it’s just my comeback is loading! I am coming for that 2023 NYC Marathon! With Brave wings I fly! NF and All!
I would not trade Hayes for ANYTHING! But I blame myself all the time for him having to live with NF. Wish I could take his struggles away!
NF is a beast. It has so many unknowns. I will continue to fight for an end to NF. I will continue to get more involved, raise more money and awareness. Let’s all keep fighting! Let’s all keep putting the word out there! We were either Born a Fighter or know a fight! Let’s do this together!
Hayes SMASH NF one leg at a time!
For information on the End NF Challenge and other NF Endurance virtual programs, please visit nfendurance.org.
