My daughter was diagnosed with NF2 through a genetic test when she was 14 month old.
The most difficult feeling for me as her mother is to take her to doctors while she is feeling healthy and forcing her to have a blood sample taken or establish a vascular access. At the blood sample she was a baby, held by a lot of strangers and screamed to exhaustion, because she was so frightened. When she had her first MRI at five years old she lay on the examination couch held by two nurses, a doctor and me, always whispering “I don’t want that” and crying. Can you imagine how it feels to not be abled to help her?
In these situations when we both cry I think about what treatments will come and I am afraid of the future. How shall I explain to her why all this happens? Why are there no healing options? My daughter will soon be seven years old and she is asking more and more questions.
I don’t want her to be in surgeries over and over again. I don’t want to see the damage NF2 causes in her life. She could ride a bike before she was 4 years old, she loves music and can handle words well. She is talking, asking questions, climbing and running all day. Today she is a very happy, thankful and active child. We need research for that she will never lose her hearing, her balance and the joy of life.