Help us fight Neurofibromatosis!
$100 raised
2% of $5k goal
2 contributors
4 Years running
When Hudson was a few weeks old, we noticed he had a couple of birthmarks. "No big deal," we thought. I too had one. By the time he was eight weeks old though, he had five. We still weren't overly concerned, until our doctor suggested we have a ...
When Hudson was a few weeks old, we noticed he had a couple of birthmarks. "No big deal," we thought. I too had one. By the time he was eight weeks old though, he had five. We still weren't overly concerned, until our doctor suggested we have a dermatologist look at him. Then we became curious. Curiosity can turn into your biggest nightmare when you look up "multiple cafe au lait birthmarks" on the internet, and read for the first time, "Neurofibromatosis" (NF1). Suddently, the most horrifying images appeared on the screen--the "elephant man," people with parts of their faces literally falling from where they should be, people covered in so many bumps that they were no longer recongnizable. That is what our beautiful baby had in store for him? We were in disbelief. Denial. This was not, and would not be the life our Hudson would have.
In April of 2012, Hudson had an MRI to check for hydrocephalus--yet another issue that can occur in people with NF1. Though Hudson was clear of having this presentation, the MRI revealed something even scarier--a substantial brain tumor that spanned from Hudson's optic nerve to his hypothalamus. The world that we had all pieced back together since it had been shattered by his diagnosis, once again fell apart. This time, however, we were determined to be even stronger for our Hudson.
Hudson began chemotherapy in August of 2012, just before his 3rd birthday, and will continue to undergo treatment for eighteen months. He has to have MRI's every three months to check his progress, and will continue to see many specialists throughout his lifetime. As NF1 is a progressive disorder, Hudson many never be completely out of the woods for many things, and his future challenges are uncertain.
Neurofibromatosis is a genetic disorder of the nervous system that occurs in approximately one in every 3000 births. Tumors, or neurofibromas, grow along the body's nerves on or underneath the skin, and can affect the brain, spinal cord, and other systemic functioning; approximately 5% of tumors become cancerous. Nearly 50% of children with NF1 have speech problems, learning disabilities, seizures, or hyperactivity. Individuals with NF1 may also have headaches, heart defects, scoliosis, bone abnormalities, high blood pressure, or blood vessel disease. There is no cure for NF1, and treatment includes surgery, chemotherapy, and radiation.
Luckily, Hudson is such a happy little boy who takes everything in stride, and lives purely in the moment. His infectious laugh makes your heart melt, as he is unaware of his terrible disorder………Please help!
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