Oct. 1, 2019
Posted by Valaree DonFrancesco
My name is Aidan, I am 19 years old and I have NF1. I have a large tumor on my neck, which goes up into my brain and down to my lungs and my left arm. I also have a number of smaller tumors throughout my body.
I was diagnosed at 8 months old, became paralyzed at 15 months old, and again at 6 years old when my tumor was pressing on my spinal cord. I had to re-learn to walk both times. When I was 6 years old I had a first-ever surgery to rebuild my spine. I had two surgeries a week apart, was in traction and put in a halo for six months. We lived in the hospital for three months straight. I have had over twenty surgeries, four this year alone, and have been on some form of chemotherapy for 17 years. It has always been a struggle.
I was diagnosed at around 2 months old, so I can’t remember life without NF. But healthcare has been a battle, even though I have healthcare. I’m constantly told I don’t need things even though I’ve been told by doctors I do. Treatments for NF are rare and I’ve been lucky to have a treatment via the NIH. I am actually one of the lucky people with NF; I’m fortunate to have access to great doctors and the best care I could hope for. At the same time, I have been bullied, ignored and disregarded because of the way I look. When I walk down the street people stare at me. I understand because no one has seen someone who looks like me, but it is very, very hard. I just put my headphones on and try to do my own thing, but it’s not easy.
My mom sold our home at the end of Long Island and moved us to New York City because I was being so bullied at school. I have more freedom in New York because everyone looks different and I don’t get noticed as much.
I am lucky to have such a wonderful support system and medical resources but I am fully aware that for most people with NF this is not the case.
The selumetinib clinical trial has gone very well. Once it’s approved by the FDA I think it’s going to make a world of difference for those with type 1. I’m lucky to be in a spot where I have really good care. I’d like to help as many people as possible