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“And, just so you know, your daughter has a tumor attached to the nerves in her gum, When we remove the tooth, we plan to remove the tumor and biopsy it.” I had taken my daughter in for a routine dental checkup on her braces and had been informed we needed to remove a tooth. I had expected the tooth removal, but the tumor came as a shock. No one is prepared to hear “tumor” and “your child” in the same sentence. I wish this had been the only time I heard this, but I’ve heard it again and again. Blame it on bad genetics like my daughter does, but she has been diagnosed with a series of invisible (and not so invisible) illnesses. Every day is a struggle to accomplish those little things none of the rest of us think about; like walking or breathing. As we learned more about her illnesses over the years, we learned these tumors can arise from a condition called neurofibromatosis, or NF.
The first time I heard of this condition I thought, “What the hey is NF and why does my daughter keep having tumors?” It turns out NF causes tumors to grow anywhere on or in the body. One in 3000 have the disorder and there is no effective cure or treatment. Because May is NF Awareness month, the Children’s Tumor Foundation has introduced their “I Am A Fighter” campaign to show ways we can help; like volunteering, attending a NF event, race or walk, sharing, or lobbying.
I’m pleased to say my daughter is a fighter. She offers support and encouragement to others with these illnesses, struggles to live as normally as possible, donates her time, efforts and money to raising awareness of illnesses, and tries to help the less fortunate. From watching her and her friends I’ve learned perseverance, acceptance and a desire to live life to the fullest. She makes me proud to call her my daughter.
You may not know anyone with NF, but we all know someone who is a fighter. Together we can knock out NF and other illnesses!
Do you know anyone with NF or an invisible illness?
Hi My 14 y.o. daughter has NF1 also. Heres a sshort video about her I did to help me raise money for the NF association at Childrens Hospital of Philadelphia:
https://www.youtube.com/watch?v=ssbIi9VRyek
Even thought the future is uncertain, I have so much hope for all our kids with NF. God bless!
Jennifer Quesenberry
I never heard of this disease before. I am glad your dental checkup made it possible for your daughter to get the treatment she needed. This is indeed a happy ending.
I had no idea about NF or invisible illnesses like this one. I am glad you are spreading the awareness!
I had never heard of it until now. Thank you for sharing it and making me aware.
I’m familiar with NF, but I don’t know anyone who has it. I feel like I kind of do now, though!
This is the first time I’ve heard of NF so thank you for helping to bring awareness to your daughter’s NF and invisible illness in general! I actually know quite a few people who suffer with invisible illnesses.
I am learning more about this illness. Thank you for your story. What a strong young lady. WE need research for all of these invisible illnesses
I have never heard of this. I am glad your daughter is so positive with so many obstacles. She will probably be a great help to someone in the future.
I didn’t know about NF until I heard about it from you a while ago. There are so many invisible illness around including autism which my son has. He looks normal but he isn’t.
I have never heard of this disease. You should be really proud of her and her fight.
If I do, I don’t know about it. I love the paintings in the last pic. I also love that your daughter is a fighter who goes out of her way with her friends to reach out and help others too. That’s an awesome characteristic to possess…the gift of kindness backed by action. 🙂
I have never heard of this before. She appears that she doe snot let her stop her!
I can see why you are a proud mom. That’s great that your daughter helps others while she is fighting her own illness. I have never heard of it before, thanks for spreading awareness.
I had never heard of NF before. Your post was very informative.
I was not aware of this disease. Thank you for shedding light on this and your daughter sounds like a wonderful young lad
Your Daughter is an inspiration to so many of us. She seems to be a fun loving person ( based on the Pictures ) who has not let circumstances get her down. Keep Pushing
I had never heard of this disease before. I am so sorry your daughter has it. She sounds like a wonderful daughter and very giving with her time and spirit. I hope a cure for this illness is discovered soon.
I have never heard of this condition before. At least she was diagnosed and you are moving forward.
I commend you fr sharing your story. I’m glad your daughter is living a full life.
Thank you for talking about this invisible illness! I’ve never heard of it before. What a strong and beautiful daughter you have!
Your daughter is so amazing! I’m so proud of her! As for invisible illnesses, it’s not quite the same, but I have a food allergy and I know how mean people can be and lack understanding. At my last job, the secretary would order sandwiches for everyone for lunch, knowing my allergy, and would tell me that I was a pain with my allergy. I just brought my own food because I didn’t want to hear people complain about my food allergy. I always try to be extra considerate to others – my problem is such a small example – but definitely makes me more understanding of others.
What a lovely young lady you have in your daughter Pam. I’m sorry to hear about her continued struggle with NF. I’ve never heard of this before. Thank you for sharing this important information with us.
I’ve never heard of this disease, but I suffer from an invisible illness concerning my thyroid. When people can’t see our sickness, they don’t understand. Your daughter is so lucky to have a mom that appreciates her and is there for her through every step!
I suffer from invisible illnesses. Your daughter is a beautiful young lady and fighter she is. She is very blessed to have a mom like you in her corner!
At this time, I don’t know anyone suffering in silence. So good that you are standing by your daughter as she fights this illness.
I am sorry your daughter is going through this. I have never heard about this illness before
I have a friend that suffers from fibromyalgia. It is a terrible invisible illness.
Yes I am aware of NF but don’t know anyone close to be who has this diagnosis. Your daughter is a beautiful young lady and it looks like she is a very strong person. I certainly will pray that they are able to make advances in the treatment and cure of this disease.
Thank you for sharing this. I had no idea about this. Your daughter seems like such a wonderful young lady.
I had not heard of NF, I love that these types of campaigns help to raise awareness. Your daughter sounds amazing, I love that she is helping others fight as well.
Your daughter is such a brave and beautiful young woman. Unfortunately, genetics can wreak havoc when it comes to these conditions. I’m keeping her in my prayers.
Yes, your daughter is most certainly a fighter! From the pictures in this post she looks like a brave girl that won’t let anything get her down.
I know a few strong people who fight everyday with an invisible illness. Your daughter is an inspiration for others.
I think my first time hearing about NF was from you. You guys must make each other so much stronger with each passing day. It’s great when your kids teach you just as much as you teach them.
Your daughter is so strong and beautiful. I know several people who battle invisible illnesses. I hate it for each one of them.
There are so many invisible illnesses. Sadly, people often don’t realize someone is ill because they can’t see it and then they don’t understand.
Your daughter is beautiful inside and out. It’s wonderful she shares her stories and helps others. Shes a real strong woman, and you should be so proud! I’m sure you are. I’m so glad you speak about these things so we can all learn too. I hadn’t ever heard of this until your posts.
She is amazing. I agree, it’s awesome that she shares her stories so she can help others.
Your daughter sounds like a great kid. I have never heard of this before but you’re definitely going to bring awareness through posts like this.
I was not aware of this disease. Thank you for shedding light on this and your daughter sounds like an amazing young lady. Hope everything turns out well for her.
I had actually never heard of it until you wrote about your daughter before. She sounds like the most amazing young lady. You definitely have reason to be proud.