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Welcome to My Page 4NF

Jennifer Licato

Jennifer Licato

“The two most important days in your life are the day you were born and the day you find out why.”
-Mark Twain

I have the questionable fortune of knowing both of these dates: December 23, 1978—the day I was born. The day I found out why? September 13, 2012—the day I found out that my daughter, Audrey, has Neurofibromatosis. From that date forward, my purpose in life has become more and more clear. To manage my youngest child’s health care in a different, more vigilant manner than is necessary for her siblings. To raise her with the confidence to face the many obstacles that may loom ahead of her. To teach her and her siblings to be compassionate, to help others the way others have helped us, to never judge someone based on their appearance or perceived disability. And, ultimately, to END Neurofibromatosis.
To that end, Audrey’s Army will be participating once again in the Great Steps 4 NF Walk on June 1, 2019. NF is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in the body at any time. It can be inherited from a parent or occur by spontaneous genetic mutation, as it did in Audrey’s case. NF is a progressive disorder that affects all races and both sexes equally. Currently there is no cure or effective treatment.
Audrey was diagnosed with NF1 at 4 months of age. She has already developed a number of dermal neurofibromas (tumors). She also has a heart defect due to NF. She complains of foot and leg pain, with no apparent cause. This could easily be the beginning of chronic, NF-related pain she may face throughout her life. There is no way of knowing how severely NF will impact her life as she grows. It can lead to cancer, learning disabilities, amputations, chronic pain, disfigurement, and more. With Audrey now in first grade, we are noticing that her speech and fine motor development, as well as her literacy development, have been a little slower than that of her siblings at the same age. This could be related to her NF, as up to 50% of kids with NF experience learning difficulties. We are beginning to watch, in dismay, her frustration as she tries to find ways to explain her physical differences to her peers. Our hearts broke when, just last month, Audrey came home saying that her shirt had risen to expose the flat, coffee-colored birthmarks that cover Audrey’s trunk—one of the indicators of NF. A friend noticed and said, “Ew, what’s that on your stomach? It’s gross!” Audrey handled it well, saying, “They’re spots because I Have NF. I was born with it. But to us at home, not for the first time, Audrey said, “I don’t like my spots. Why do I have to have them?” We worry that her self-image will only grow more negative as she ages and her NF progresses, potentially becoming a great deal more disfiguring.
Yet, we are incredibly lucky. Audrey has been very healthy thus far, and fiercely enjoys the life of a very normal, active six-year-old. That is not true for all battling NF—a point on which we reflect each year as we remember Beth Beattie, a little girl just Audrey’s age who lost her brave battle with NF a two years ago.
We walk each year to celebrate Audrey’s health, we walk to help her take ownership and pride in NF as part of her identity, we will walk in hope for her future—that she will remain healthy and that treatments will be developed in case she does not—and we walk for all her NF brothers and sisters, like Beth, like our dear friend Ben, and all other little NF heroes who are fighting battles so much bigger than they are.
Audrey will turn 7 this May, and we are proud to say that this is the seventh year we will walk in her honor. Last year, we once again raised over $10,000, and narrowly missed finishing as the first place team. In the past seven years, Audrey’s incredible army has raised over $60,000 through various fundraisers to END NF. We are very excited to add to that figure. But, there are many ways in which you can help. Monetary donations are, or course, appreciated. You can also register to walk with us, and simply pay the registration fee without an additional donation. You can ask others to sponsor you in the walk. If you raise $100 or more your registration fee will be waived. You can donate valuable items to be raffled off on the day of the walk. If you are a business owner, your business can sponsor the event, or you can pass out promotional giveaways to walkers along the route. The most important thing you can do for Audrey is also the easiest. You can share her story. You can ask me about neurofibromatosis, or look it up at nfmidwest.org, and share what you find with someone who has never heard of NF, as I hadn’t until my child was diagnosed with it. NF is probably the least well-known genetic disorder, yet it is the most common one cause by a single gene; more common than cystic fibrosis, Duchenne muscular dystrophy, and Huntington's Disease combined. If you are unable to help in any other way, spreading the word about this disorder will could help Audrey and other NF heroes immensely.
When another child comments or asks Audrey about her spots and her feelings are hurt, I tell her our family was given a special job to teach others about NF, and every time someone asks her about it she has the chance to do just that. I tell her it takes courage to have this job, but I know she can do it. If each of our friends tells one new person about NF, and helps us spread awareness, that may be one less person who says, “Ew, what’s that?” to Audrey, or to another child with NF. What a gift!

Comments

$6,931.13
raised of $5,000 goal
 

Recent Donations

$25.00
1. Lawrence Hack
$150.00
2. Mom, Dad, Sophia & Cole
Love you, Audzilla!
$25.00
3. Dana Riedel
$200.00
4. Katherine Barnash
$20.00
5. Melissa Newkirk
Way to go on your fundraising! Hope it’s a perfect day for your walk!! Melissa, Madison & Eric
6. Benjamin Olson
Walking with you in our hearts, and applaud all your tireless efforts to raise awareness and funds to EndNF! (🦆NF)
Captain

Team Audrey's Army

$9,584.13
$5,000