My name is Lara and I am 31 years old. When I was 24, my Dad suddenly passed away. He was only 44. He had a condition called Neurofibromatosis, also classified as NF1, and also known as von Recklinghausen disease. He died from tumors that grew on his brain. When my Dad passed away, we found out I also have NF1. What I always thought were birthmarks turned out to be tumors growing in different places all over my body, thus I too was given the diagnosis of NF. I also found out three of my five children also have this condition.
My second born (Anthony) suffers the most from Neurofibromatosis. He might need surgery soon to remove large tumors that have grown on his brain. He is checked every six months to see if the tumors are still growing.
Anthony is only eight years old. Because of the danger the tumor poses for his brain, and depending on rapid the tumor grows, surgery is likely.
My other sons (J.J and Mathew, ages nine and five) also have to be watched closely. We are always hopeful we can catch the tumors before they get too bad. There is no cure for Neurofibromatosis. All we can do is remove the tumors, or radiation when removal is not an option.
I never thought I would lose my Dad at such a young age. Many times, I think about what will happen to my children if I die suddenly, or wonder why this disease happened to me and my precious children? Most times, I enjoy watching my sons play with their sister and enjoy their lives as children should.
We have hope – it’s in our genes.