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He said hold on Nana, I have to put the phone on my good ear. So I said, what do you mean
your good ear. He said, well my other ear doesn't work. I took him to an ENT, a local
ENT, and they said it's probably allergies, and they put him on different allergy medications
on and off. The second ENT said he seems to have nerve damage. I think his hearing nerve
is damaged. And he said to me on the phone, he said being that he has this meningioma,
there's a very high probability that this is neurofibromatosis type 2. You know, life
as we knew it, was completely changed. Oh, you need to take him out of karate. No contact
sports. No trampolines. No rollercoasters. I don't like rollercoasters. I've never been
on a rollercoaster. I never liked them and I certainly feel like that's how our life
is, more like a rollercoaster. He's like, I have big dreams and I have plans, and is
this going to keep interrupting my life? Are these tumors going to keep growing? And keep
interrupting my life? And you know, sadly, that's exactly what NF does. He just really
inspires everybody with the positive attitude he has and the determination to not let this
ever stop him from doing anything that he wants to do. That's the way you have to handle
everything, cause if you're sitting here in a hospital depressed and everything, it just
makes everything harder to go through, you may as well have fun with it if you can. Bailey's
like, no, no you can't turn it off dad, and my husband's like just till you fix it, so
my husband tapped it and Bailey started going like this... in the bed, and my husband almost
hit the floor, he pretended, and so quick, he's very quick witted, pretending that he's
having a seizure or something in the bed, and my husband's heart, like he needed the
heart monitor at that stage. He loves science, he loves engineering, I mean he likes to go
bike riding, you know, he hangs out with his friends. He loves the Yankees and baseball,
and going to games with his sister, he loves going to the car racing events in Daytona,
and keeping in touch with the race car drivers. We have to wait, and we have to watch for
it to grow, because if it grows, he could be completely deaf. And that's why, that's
the importance of the gala. It's to get research money so these kids don't have to sit every
six months and wonder if their tumor is going to grow and they're going to be deaf. Or they're
going to, you know, not be able to move one side of their body, or they're going to have
to get their leg amputated. And my son never speaks about, you know, how it feels, but
to live knowing, like doctors have told him, you could wake up one morning and just be
deaf. You know, or to have your child sit in an office and hear. well if it grows again,
we're going to have to amputate your leg. My goal is to really raise awareness and to
let the people who aren't involved with the NF community know how important they are to
the NF community, and how much of a difference they can make. They're the ones that have
the biggest effect on my life and the lives of everyone else with NF.