This story was submitted by Ivan’s mother, Francis.
Ivan was only about 3-4 months old when we first heard the word neurofibromatosis. His official diagnosis came at 6 months through genetic testing. He was a spontaneous mutation, and it was a scary new diagnosis. 
NF has impacted his ability to live life like a normal child. It has given him his share of scares as well as struggles and learning difficulties that he’s had to overcome and learn to manage. It’s hard to plan for the future because, as much as we’d like to believe and hope that his struggles will be less, we know NF is a progressive disorder, and that makes the future very uncertain.
I think we’ve had a few defining moments, some good and some not great. The first would be when we first received his official diagnosis. Although the news was hard to hear, it was good to finally have a name to attribute to what was going on, and we became part of a family that we never asked to belong to, but the NF community was very supportive. Another defining moment was right after the diagnosis, I made up my mind that this wasn’t going to defeat me, and I would use all my strength to learn to advocate and to raise awareness for my child and others going through the same. And more recently, when Ivan was diagnosed with optic gliomas and then cancer, a few months later, the cancer was gone. So it was an emotional year, but it was also an awakening that life is not certain, and that NF is a horrible genetic disorder, and we need to keep fighting and raising awareness to keep looking for a cure.
Ivan loves playing Roblox and all kinds of games online. He also loves traveling and seeing new places. He has three siblings with whom he plays, and he is such a happy kid despite all of the struggles. He’s the bravest kid I know. He is such a funny kid and he has a smile that is contagious. He is very loving but also opinionated. And he’s also very loud lol.
Favorite Song
Staying Alive – Bee Gees (it has become his anthem)
Dream Superpower
I think he wishes he could fly. As a mom if I had a superpower it would be the power to heal my kid.
Favorite Food
Raising Cane’s and ice cream
Fun Fact
He has a very strong sense of smell, and he isn’t afraid to say if he likes or dislikes a smell.
