Madison :: Neurofibromatosis 1 (NF)

NF is a genetic disorder that effects 1 in every 3,000 births. People born with NF are missing a tumor suppressing protein and as a result, tumors can grow anywhere in the body that a nerve exists. NF effects every person differently. The first sign of NF is light brown birth marks all over the body. For more information about Neurofibromatosis and ways to support research for NF please visit Children’s Tumor Foundation.

Madison has a debilitating tumor that is growing inside her leg; from the top of her bottom to the bottom of her foot. The tumor has made her leg grow significantly faster than the other leg. Maddie’s tumor is intertwined with the nerves in her leg and it causes severe pain. Madison also has a tumor growing in her optic nerve, which could potentially cause blindness.

Madison and her mom fly to Washington, D.C. every three months to see her specialists. Madison has been participating n a clinical trial to stop the growth of her tumors however, her recent scans show the her tumors have continued to grow. She has been bumped from her trial because the treatment was not working for her. There is no cure for NF but Maddie will continue to try different treatment options in hopes one will work to stop the growing of her tumors and help this sweet girl manage her pain.