To Amber's family, friends and fellow supporters,
Just two months shy of her 17th birthday, Amber was diagnosed with a genetic disorder known as Neurofibromatosis Type 2 (NF2) in September of 2003. It’s a genetic disorder that causes tumors to form throughout the central nervous system and other random areas all over the body. The onset of this disorder was apparent at birth with her right eye being undeveloped, but with no known case of NF in her family, it was not evident until later when her hearing started descending in early Jan 2003.
Her first life changing brain surgery awaited four months after she was diagnosed. It cost her all of her hearing, the movement on the right side of her face, total blindness in her right eye, tunnel vision in the left, balance impairment and slight taste deficiency. With neither knowledge of NF2 nor many friends with NF, the first two years were the hardest.
“I basically thought that I was going to die and I remember crying myself to sleep for a straight month after I found out what I had. I had no will power to live and try anymore and I shut out a lot of people and didn’t want to see anyone or go anywhere because of how I looked and the fact I was deaf,” said Amber, who’s now 21 and will be 22 in late November this year.
Despite having to be home schooled her last two years of high school and undergoing at least three surgeries, she graduated.
”I told myself one thing and that was that I was going to finish what I started and I will finish with my class and that’s what I did. It wasn’t easy and I missed out on a lot of growing-up experiences like learning to drive, getting your first job, first car, applying for colleges, prom, high school parties; you know, those normal things every kid should get to do. I had to grow up before everyone else,” she said.
After a year and another couple of surgeries, Amber was improving. “I got sick of crying that pretty much sums it up,” she said, laughing. “I got sick of feeling sorry for myself and sick of being home all the time and just sick of being, well, sick. I realized life does go on and its about time I wake up and try something. I applied for college online and after that, life slowly followed and caught back up with me.”
She now has an ABI (auditory brainstem implant) that allows her to hear sounds, but note: they aren’t normal. “A lot of people who have it would say its just a bunch of beeping, but after three years or working with it, I like to call it tones and pitches like a keyboard. A knock sounds like a knock, a phone sounds like a phone, a bird sounds like, a bird with a very sore throat. People don’t sound the same, but it helps a LOT with lip reading and I’m getting better at it as I work with it. Oh! And thanks to my boyfriend Paul, my iPod is loaded with music! And yes ill admit, I’m one of those techno freaks who loves a good beat!” says Amber who laughs at her last comment.
She recently just had five surgeries in the past 8 months as well. “After the first three or four in my life I got used to having surgeries every year or few months but this past ordeal….enough is enough! I’m done! I can’t continue down this road so next up are drug trials and a cure needs to be found! There’s only so much a girl can take on.”
Amber, her mother and a few fellow NF2ers went to the Disney marathon in January of 2008 and after that experience she set a goal.
“I told my mom and my friends that I am sooooo doing this next year! And here I am and that’s what I’m fundraising for.”
“Ambers one of those people who takes things in easy and pushes it aside like its no big thing. She can always bring a smile to someone’s face or make you laugh and is easy to get along with. She knows she doesn’t have the best of everything but she can make the most of what she has and can see the bright side of any situation. Her ability to deal with surgery after surgery (and counting….) is one of the things that truly show’s her strength.” says her mother, Carol Duby, who’s also walking the half with her daughter.
Her cousin & friend Ashlynn Redburn is also walking along side her. “I've known Amber since day one when the effects of NF first started to appear. I watched her struggle through all the losses she had to endure, due to surgeries and time away from school, family and friends. But she has never given up, she pushes herself to be something more than what she has been told her limits are or will one day be. Every surgery is a set back and she has to start over a little more each time. Her persistence and drive to get back to doing things on her own has been an inspiration and motivation for me (and others) to get out there and do it with her,” states Ashlynn, who helps with Ambers travels due to the fact Amber can’t drive.
The Walt Disney World ½ marathon will be the first event these women will participate in. They are walking for research, for awareness and most of all, for a cure to help those with NF. They are training, fundraising, and spreading the word. You can help them find a cure for NF by donating to this cause as they walk for research! Any contribution is very much appreciated.