I received this wonderful message from Tammy. Tammy was nice enough to let me share this message. I am always encouraged when I get messages like I have been getting from you all. It’s good therapy for all us to meet here and support each other in time of need. Oh and not to forget all the fun we lave here, as we learn about NF together. Lets start supporting Tammy and Austin. That’s what we do here right. Maybe we can talk Tammy into send a picture to add with her blog. What do you say Tammy? 🙂 Hope you see you here soon.
My name is Tammy Moreau. When my nephew – Austin – was born back in 1996, my mother noticed a little knot on the outside of his head. She asked the doctor what it was, and they just said, “Scar tissue.” How scar tissue might have been on a newborn, we weren’t sure, but we shook it off.
As Austin aged, we started noticing that the little knot started getting larger. It seemed to be growing down the outside of his head. Mom (ever the caring grandmother) also noticed that he was beginning to get these odd “coffee spots”. Austin’s parents kept asking the doctors about it, and they never knew the answer, or they just shrugged it off. Then….one day we took him to a doctor’s appointment.
The doctor he was seeing just happened to mention that the knot and the coffee spots were symptoms of a disorder called Neurofibromatosis. Such a mouth full! He then referred Austin to an NF doctor in Columbia.
To make a long story short, Austin is turning 11 this year. In his short life, he’s already had 3 big surgeries, and it looks like he’ll have to have a bunch more. The knot followed the grow of the plates in his head, and came down into his eye. Austin also had several tumors inside of his eyelid, in which he had to have debulked at a young age. His left eye started to droop considerably, eventually causing a “deformity”. The doctors told us he had a tumor on his optic nerve, and advised highly against having it removed. They said the chances were quite high that he would go blind and deaf on that side. My brother was terrified and did as the doctors said. Eventually Austin started having horrible headaches and nosebleeds, so we had no other choice but to have the tumor removed.
Good news. They removed 98% of the tumor, and Austin kept his hearing and his eyesight. The downside….he is unable to open his eyelid on that side, due to their having to cut several muscles and nerves. Unfortunately, although he can currently see out that eye (if he holds his eyelid open), he may still lose that eye. Since we followed Doctors orders, the tumor cut off vital nutrients to his eye as it grew larger.
A few months after his surgery on his optic nerve, we found out at a routine dentist appointment that Austin had 2 more tumors…this time in his mouth. He had them removed, and now not even 2 months later, he has another tumor in his mouth.
When it all first started happening, you could tell that it was affecting Austin’s self esteem. You would find him looking into the mirror and just staring at his effected eye. It broke my heart everytime I found him doing that. He has been made fun of several times at school, and I just do not see how he can deal with the cruelty of some children. His brother does seem to defend him quite a bit (Kevin does not have any signs of NF).
I don’t know why I felt it necessary to write you this story, but I felt compelled after seeing your site. I applaud your bravery in dealing with your disorder and trying to educate others about it. I hope one day through your efforts and the efforts of others (CTF, CDC, etc) we can find a cure for NF. I also hope that others can see you and my nephew and all of the other NF suffers as you should be seen, as beautiful people who are the same as all of us on the inside.