Nia B.'s ExoSym Journey to Freedom!

Hello All!

Nia's goal is to raise awarness, but my goal is to raise FUNDS! Nia leaves in 2 weeks (April 2nd)  to go back to the Hanger Clinic and neesd to be COMPLETLY FUNDED! Lets bless Nia and her family and help offset the cost of these unexpected (yet! life-changing) medical bills. 

P.S. You can also make an offline donation by contacting the Hanger Clinic in Gig Harbor, Washington directly!         (Scroll to the bottom for all the info)

Above is a short 5 minute video of Nia's journey so far, and below below you can read a more detialed version in Nia's own words. I just wanted to say THANK YOU! Thank you for taking the time to learn more and help this precious gem of a women, mother, wife, daughter, and BEST FRIEND! She is a WARRIOR in every sense of the word. Help her fight her way back to a "Normal Life"



Nia's Story from her own words:
______________________________________________________________________________

Hi!
My name is Nia Bates and I’m an active mamma who loves life and wants to experience all that it has to offer. Unfortunately, over the past decade I’ve felt trapped in my body because of daily ankle pain and lack of mobility and function. Not only have I NOT been able to run for the past 12 years, I can no longer teach Physical Education (the job I loved), perform simple tasks such as grocery shopping, going up and down our stairs for laundry, walking with my family and playing as much as I want with our children. But I’m here today to share a recent discovery & the amazing journey I’m about to take towards freedom with a life-changing device called the: ExoSym! I hope that through sharing my story, others who suffer from debilitating ankle pain might become aware of this non-invasive & revolutionary option available so they, too, can experience all the blessings life has to offer!




From the beginning…

On the first day of 2nd grade, when I was 8 years old, an x-ray showed a tumor inside my right fibula bone.  The initial tumor was successfully removed, however, 6-weeks later it returned and it had quickly grown to twice the size. So, in order to stop the spread of the tumors, they needed to go in and not only remove the tumor itself, but also 3/4ths of my fibula bone. During the operation, they ended up hitting my peroneal nerve and causing nerve damage that controls the movement of your foot and toes. I watched as the doctors solemn face delivered the news that I would no longer be able to walk and that I would probably be in a wheelchair for the rest of my life. My world was simple and I trusted and believed that this was not the end of my story but merely the beginning. I remember smiling at the Doctor and telling him that I WILL walk again because God has a plan with my life. It was never a question of “if” but “when”.

A Miracle Moment…

After months of being in a wheelchair and going to physical therapy without any change, I’m sure others had accepted this as permanent. After all, the doctors had explained the odds and it would require a real miracle for those outcomes to change. Well, by the grace of God, that miracle came one day in a PT session when part of my nerve unexplainably came back!  The physical therapist was shocked, confused and scratching his head. I’m sure you can guess what I was doing. Smiling. I was not shocked or confused. As I mentioned before, I knew God had a special plan and I knew it was now time for me to get going. From that moment on, they taught me how to walk again. From baby steps, to full strides, to running full speed. My goal? To make it to Drill 4 Skill basketball camp that summer. Not only did I make it there, but it was there that I learned I had a gift for playing that would open many doors over the next 13 years.

Love for the game…

Now that I was back on my feet, I was doing every physical activity that I could. From golf, to softball, to swimming, to tackle football on the asphalt with the boys, I certainly was never sitting still. However, being 5’10’’ in 4th grade, I felt destined to play basketball and from that moment on it’s all I thought about. I mean have you seen my 4th grade school picture? Instead of a pretty dress, I chose to wear a basketball turtleneck tucked into my red sweatpants with a gold basketball chain around my neck, Jordans on my feet, all while holding a basketball. Oh, and I forgot to mention the Jonathan Taylor-Thomas bowl-cut that I was sporting because I thought that would be a perfect choice for my thick italian hair. Well, it all builds character...and a sense of humor, folks! I played basketball 24/7 and had a successful career playing for Moon high school winning the WPIAL’s and competing in States and on a Pittsburgh AAU travel team that placed 5th in the country. I remember how exciting it was to be recruited and see my dream of playing in college coming true. We visited many colleges and universities all of the US, but narrowed down schools based on one thing: their Physical Education program.  I knew exactly what I wanted to be since 2nd grade and the inspiration that Mrs. Marcocci and my P.E. teacher, Mrs. Kosanovich had on my life. I decided to sign with Division 1 Canisius College (a school I had never heard of before) based upon their stellar P.E. program, great basketball conference and proximity to home.



Going from the top to the bottom…


My freshman year as a Golden Griff in was amazing! In 2005, we defeated Marist to win the MAAC Championship for the first time in school history. We then went on to play Duke in the NCAA Tournament at the Dean Dome at UNC. All of my wildest dreams were coming true and I was clearly at the pinnacle of my career. And then, at the start of my sophomore year, the pain came. Our team physicians and I were starting to notice that my ankle was starting to deteriorate and they thought a simple scope to clean it out would help get me back to 100%. For the rest of that year I struggled to get back to ‘pain free’ and we searched and searched for answers and strategies to help improve my ankle stability and pain, especially since I didn’t have that fibula bone to support my joint. In 2006, our team physician suggested a syndesmotic fusion right above my ankle joint to fuse the small (and floating) piece of fibula bone that I still had left with my tibia bone. He thought that if that area was stabilized and secure that it might eliminate my pain once and for all. I redshirted that year in hopes of returning to the court for my final two seasons. It was a long and grueling recovery and the surgery itself was a ‘success’, however, to our dismay it did not provide the pain relief we were so desperately hoping for. The end of that year and the end of that recovery sadly brought the end of my basketball career. I will never forget the moment when I was told it was all over and it was time to “hang up the sneakers”. In 2 years I had gone from winning a D1 championship to not being able to run. It was one of the lowest times of my life and without the hope and strength of Jesus I would have never made it back on my feet to face the days ahead.


For the past 12 years…


Since 2006, I have been doing my best to manage the pain and the deterioration of my ankle. I have had 5 additional ankle surgeries in the past 10 years and it has slowly prevented me from doing more and more.  I am an elementary Physical Education teacher (my dream job since I was 8 years old!) and I had the great honor and privilege of teaching for 9 wonderful years in the Lockport City School District. During that time I noticed that it was becoming harder and harder to be on my feet all day and physically be able to be the teacher I wanted to be. Also, in 2014, our lives got even busier when we added our beautiful and spicy, Lena Pearl to the team.  When I went back to teaching, it wasn’t long after that we found out I was pregnant with #2...and this time, a boy! During that 2016 teaching year it was becoming more and more evident that because of my ankle, I wasn’t able to do either job, Teacher OR Mother very well and a decision had to be made. So, this past June (2017), I had to make one of the hardest decisions of my life: to resign from teaching. Not only has my disability prevented me from doing my job as a teacher, it has held me back from being the mom that I want to be.  With a busy 3 year old and a ‘walking-accident’ 14-month old, I have struggled to manage daily care and have to forgo walks or places that require me to do more than 2 minutes of walking. If we venture out to a park, zoo, airport or amusement park, I know have to use a wheelchair or motorized scooter.  For almost a year now, I haven’t been able to grocery shop, go shopping at the mall or large stores, and doing a simple task such as laundry has becoming very challenging for me.


The tipping point…

In June, 2017 I had reached the end of my rope since my ankle was so bad that I was dragging my foot on the ground in order to walk. I explored 3 major options hoping for a change:

1)Full Ankle Fusion: a permanent option where I would lose all mobility and it can cause other issues down the road.
2)Total Ankle Replacement: I am too young; the technology isn’t there yet; it doesn’t last very long; and there wasn’t a good chance that it would me reach a desirable outcome.
3)Voluntary Amputation: yes, I said it. It may seem like a drastic step, but when your living with daily ankle pain you reach a point where you are emotionally, mentally, AND physically done with dealing with this and you want to move on with your life. I saw people who had amazing prosthetics and were not only functioning better than I was, but some were even running marathons!

THANKFULLY, we decided to have it cleaned out one more time in August of 2017 and in the process of that recovery, we came across an answer to prayer on January 16th, 2017 while I was ironically on 2 weeks of bedrest for a spinal fluid leak. (God sometimes works in mysterious ways!) I discovered a new bionic leg device, called the ExoSym, that a woman was wearing in an Ankle Replacement Group I was a part of on Facebook. She went from hardly walking to speed walking around her driveway with a huge smile on her face! My eyes widened and my heart raced. I instantly began researching this device and found that it was through the Hanger Clinic and what joy I felt when I saw a branch here in Buffalo, NY!  The next day I was on the phone and planning my appointments. The gentleman at the Buffalo branch explained that if I am a candidate for the ExoSym device that I will have to go out to Gig Harbor, Washington for the whole process. At this point, I would have traveled to the ends of the Earth if I needed to!


A Brief History of the ExoSym


In 2009, Prosthetist Ryan Blanck designed the ExoSym (formerly known as the IDEO brace) at Brooke Army Medical Center with the goal of reducing pain and restore mobility to active-duty and retired military service members with severe limb conditions as a way to avoid amputation. In 2013 this technology was made available to civilians at the Hanger Clinic in Gig Harbor, Washington and has restored high-level function and mobility to many people who have experienced severe leg and ankle injuries. The ExoSym IDEA (Intreprid Dynamic ExoSkeletal Orthosis) is a cross between a prostethic and a leg brace that redirects weight around the injury. The upper section incorporates many socket design concepts used in prosthetic limbs. Each patient is evaluated for the right degree of alignment and off‐loading for the specific injury and dysfunction. The ExoSym incorporates a specialized dynamic energy‐storing strut system often used in prosthetic running limbs for amputees. This adaptation provides injury‐specific deflection, energy storage and power, all while maintaining control and minimizing pain.Their program fits the patient for the device and then trains each patient through an intensive physical therapy program, usually a week long, to make sure they are properly use of the device.

For more information regarding Ryan Blanck and the ExoSym:

 http://www.hangerclinic.com/bracing-support/adult-le/Pages/Limb-Salvage-ExoSym.aspx 

ExoSym - YouTube Video 

In February, I began my ExoSym journey to freedom when I flew out and was casted and fit with the plastic prototype to get an idea of how it will feel and how it will work. It’s hard to put in words what it was like to walk without pain for the first time in 12 years. With the carbon fiber finished device, not only will I be able to walk without pain, but I will be able to work up to running again one day! I never thought I would ever have that opportunity ever again to run and isn’t that just the cherry on top! We are so excited about what the ExoSym Device will mean for not only me, but for our family and for the freedom it will provide. We have booked our flights back out to the Hanger Clinic in Gig Harbor, Washington from April 3 - 11th to receive my finished device and to complete the initial 5 days of intensive physical therapy with the device. Once I return home, I will have to continue with PT since I will be learning how to walk ‘normally’ again and will be relearning how to jump, jog, bend, twist, etc. with my new bionic leg!


Help me to Raise Awareness!


This life-changing, non-invasive, device is still not very well-known. If you know someone that is struggling to walk, please share and pass along this information so they, too, can explore if this option might be able to provide the freedom they are hoping for as well. Also, I am happy to speak with anyone exploring this option and you can reach me via email at: niacaye@gmail.com I would like to share that the only negative is that it is currently not covered by insurance. Besides personally financing it on your own, you are able to finance it by using Care Credit to make 18-20 month payments with 0% interest. The Hanger Clinic also provides some payment plans in house and there may be some other options through your personal bank as well. Here is the current breakdown for expenses:

ExoSym Leg/Ankle Carbon Fiber Device: $9,000.00

Carbon Fiber Knee-Stabilizing Attachment (I need this since I don’t have my fibula but this is NOT a requirement for all patients): $1,800.00

Flights, Lodging, and Car Rental for the week in Seattle, WA from Buffalo.: approx $2,200.00

*You will also need to purchase a couple pairs of new shoes that will be wide enough to fit your device. You can purchase those near the clinic once you return for your training week.*


Info on the Hanger Clinic in Gig Harbor, Washington:

555 Erickson Street

Gig Harbor , WA 98335

Phone: (253) 572-7478

Fax: (253) 593-7980

Hours:Monday - Friday, 8 A.M. - 5 P.M.

Thank you for taking the time to read my story and if you would like to hear the unabridged version of my 25 year journey to walk again, you can find the full video on my YouTube channel here: SCARS ARE BEAUTIFUL: MY *REAL* {UNABRIDGED} JOURNEY TO WALK AGAIN 

For updates, Vlogs, and to be a part of this journey with us, please subscribe to my YouTube Channel:--> Nia B. *real*  <--and you may even discover The Princess & the Puppet Shows from our cozy cottage. :)

Donations

  • The Seretti Family  
    • $100 
    • 25 mos
  • Sylvester Family  
    • $100 (Offline)
    • 25 mos
  • Tucker Family  
    • $200 (Offline)
    • 25 mos
  • Bob & Donna Staak 
    • $100 (Offline)
    • 25 mos
  • Burke Family  
    • $100 (Offline)
    • 25 mos
See all

Organizer and beneficiary

Nicole Hay 
Organizer
Buffalo, NY
Nia Bates 
Beneficiary
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