NF refers to a number of genetic conditions and carry a very high risk of tumor formation, particularly in the brain. Although Neurofibromatosis is a genetic disorder, half of the cases show no prior disorder in other family members. The severity of issues and symptoms vary, though, if one parent has NF, there is a 50% chance their children will also develop the condition. There are currently three types of neurofibromatosis: NF 1, NF2, and Schwannomatosis. Liam has been diagnosed with NF1, which includes tumors that grows on nerve tissue that may be benign, but can cause other serious damage by compressing nerves and other tissues. His tumors are on his optic nerves and growth can cause vision issues, blindness and even hearing problems over time. In addition, NF1 children are 5 times more likely to experience developmental issues, including learning disabilities.
Liam's story is far from over, but he has already been through so much and is our little hero. There are so many children affected by this disorder and the more we learn about it, the more doctors can do for our babies.
Liam was a preemie and his lungs were not fully developed at birth, but we had no idea the future would bring more health issues. For almost 8 months, he was a happy little fellow who seemed content with his family and was rarely sick. Then, almost four years ago, I was writing a blog post about birthmarks and realized Liam had an uncommon amount of café au lait spots all over his body. While researching birthmarks, all the websites said to contact a pediatrician if your child has more than 8 café au lait spots. At that time, Liam had 18. I was in a panic as I called and scheduled an appointment with Dr. Cheek and, two days later, we went in to discuss what this could mean.
Dr. Cheek honestly didn't know much about Neurofibromatosis and I certainly didn't. Yes, I've watched programs on TLC and other channels about extreme cases of NF, but nothing about babies and children with NF. So, he referred us to a neurologist and, a few weeks later, Liam was scheduled for his very first of many MRIs. The first MRI showed no growth, but the results changed in 2012. The neurologist found two brain tumors, one on his optic nerve and one deep in his brain. At this point, we were referred to a pediatric oncologist. Continued growth was found and, in September of 2012, Liam began chemotherapy to shrink his brain tumors. After three months of treatment, another MRI was given and we found out that the chemo was not working, so we changed to a different chemo treatment that would last from 9-12 months.
|Liam playing during a chemo treatment at the Aflac Cancer Center|
|Braves Night with the Aflac Cancer Center. Liam met Tim Hudson!|
Children's Tumor Foundation website. They are a wonderful resource and do so much for our little guy. Please share Liam's story with others. Together we can #EndNF and spread awareness!