Our chid was diagnosed with a rare disorder in 2014, NF2. We need a cure now to stop tumor growth in its tracks and prevent further damage that would result in loss of body function.
We started our journey with a difficult pregnancy issue and a complicated delivery. At 3 months our son Markus had been diagnosed with a tumor in his eye and on the nerve endings inside of the brain. After a misdiagnosis we were nervous, we were told it was non-cancerous, and that we wouldn’t have more issues. He was diagnosed blind in his right eye.
At 5 he still could not see well from his good eye. After I insisted that they test his good eye with new updated technology they found a new tumor, and more issues. Luckily our doctor had read up on NF2 and the findings of these double eye tumors. He sent us for our 1st MRI revealing 2 VS ear tumors and other brain tumors. We monitor about 10 major tumors now, and 1 could stop breathing functioning. Now there are more then a dozen skin tumors, that are creating major discomfort, for our 12 year old son.
Nf2 is a scary rollercoaster we are always waiting for the next drop. Markus has had 10 MRI’s at this point and will go at least yearly, until we need surgery or radiation or chemotherapy. These all have risks, that is why gene therapy is our best option.
We want to help raise money and awareness for this disorder. We do not have any longer to keep waiting for tumors to grow. Growth can mean loss of vital body functions. A child with low vision losing more functions scares me as a parent immensely. I hope and pray for a cure, not just temporary medical treatments that may or may not last very long.