When Victoria was 11 she was diagnosed with a genetic connective tissue disorder called Ehlers-Danlos Syndrome, after a three year search for an answer. EDS affects about 1 in 5,000 people and is often seen as an "orphan disease" and an "invisible illness" because it cannot be seen just by looking at her. It can cause a range of symptoms from elastic skin, to frequent joint dislocations, to life threatening injuries, and, above all, chronic pain.
Until the fall of 2013, Victoria was a successful pre-medical student at Eastern University, a member of the Women's Soccer and Lacrosse teams, a leader in the campus' College Life club, and a part-time nanny. With the onset of symptoms like a constant, severe headache, memory loss, numbness in arms and legs, inability to sleep and a mess of other symptoms, she was left in debilitating pain and was forced to withdraw from school and seek an answer for her extreme change in her quality of life.
On April 7th 2014, Victoria had her first surgery to reduce a kyphotic clivio-axial angle causing a ventral brainstem compression, to relieve a herniation of her cerebellar tonsils (Chiari Malformation), and a cranio-cervical fusion to reduce severe instability between C1, C2 and her skull.
As a result of her first surgery, Victoria's spine was set in the correct place - standing almost two inches higher than she did before surgery. When this occurred, it was discovered that Victoria's spinal cord was tethered to the bottom of her spine and was thus stretched an additional two inches. This caused her to lose feeling and some ability of her legs, cause her to develop a neurogenic bladder and suffer nerve damage from the cord stretching. At this time, we also discovered that she had undiagnosed spina bifida occult. Surgery in July of 2014 unthethered her spinal cord and fused the unformed portion of her sacrum - allowing Victoria to return to school weeks after surgery.
As the 2014 fall semester progressed, Victoria experienced a sharp and sudden decline in her health. After meeting with her neurosurgeon over Thanksgiving break, Victoria and her family became aware of worsening instability throughout her cervical spine. Taking her final exams early, Victoria had her third surgery on December 10, 2014 to fuse C4-C5. Four days after surgery, we became aware of yet another genetic condition when Victoria suddenly experienced a full-body, quadriplegic paralysis attack. After a second attack, she was diagnosed with Hypokalemic Periodic Paralysis.
Determined to continue with her schooling, Victoria returned to Eastern University for the spring semester in 2015. With the beginning of the new year, however, many of Victoria's symptoms returned and gradually increased in number and magnitude over the next few months. After countless doctors appointments and tests, it became quite evident that the entirety of Victoria's cervical and lumbar spine provided little to no stability and were a danger to Victoria's life. On September 1, 2015 Victoria had her 4th surgery, this time focusing on her cervical spine.
In fall 2015, Victoria had four additional surgeries to provide support and stability to her spine, and an 8th surgery in April 2016 to relieve pain from the fusion instrumentation.
(August 2016 Update)
4 weeks ago, we had a some-what routine visit with Victoria's neurosurgeon. The next morning, Victoria got a phone call from him saying that surgery needed to happen - immediately. Surgeries #9 and #10 seem like a blur. Happening so quickly, Victoria in so much pain, so many additional procedures in such a short amount of time to try to help our girl. She's a fighter and has been fighting extra hard to return to a life we can call somewhat "normal".
Believe it or not, beginning in October (just 6 weeks after surgery) she will beginning a course at Mount Saint Mary's University. In April, she founded a non-profit, "The Zebra Network," to help patients with Ehlers-Danlos Syndrome - similar to herself. She has decided to take this course, get herself back into school, and really be able to learn the ins and outs of non-profit management, aiming for an Interdisciplinary Major that combines her passions for medicine, human resources and business in order to make a difference for these patients. Her organization has already reached coast to coast in the United States and even internationally.
One step at a time, we keep reminding ourselves. Even three weeks after surgery, Victoria gave the keynote speech at the Maryland Conquer Chiari - Walk Across America event. She refuses to let anything keep her down. While we continue to push forward, we greatly appreciate your help in supporting Victoria's medical bills. As you can imagine, these last two surgeries were a surprise - and we also are still trying to catch up from the operation in the Spring, and three last Fall.
We have no doubt that our girl will continue to battle the obstacles in front of her, that she will take on more than she is asked for the sake of others, and that it will all be done with a smile. Thank you so much for your support thus far, and in the future!
Victoria is also entering to receive a $10,000 #GFMScholarship to help pay for her schooling. We need to the help of 10 "unique" donors, your help is always appreciated
Victoria has always been dedicated to creating and organizing fundraisers to help those in need. In high school, she led fundraisers for a low income school in Alabama that had been affected by tornados, for support for our U.S.troops serving overseas, and also for a polio orphanage in Tajikistan. Most recently, I worked with my Eastern University/CollegeLife friends (with the support of many of you) to put on a prom for patients at St. Christopher's Hospital in Philadephia, PA who were unable to attend their own school dances due to their medical issues. It was a great success and we had a wonderful time! “I have always done by best to help those in need,” Victoria said, “never did I think that I would be in a position later to be asking friends to support me in my own medical fundraising.”
Since the beginning of her medical journey, Victoria STILL seeks ways to help others in need. She is currently holding the Miss White Oak 2016 title, where she holds the platform: "But You Don't Look Sick - Making Invisible Illnesses Visible, and also is a mentor to four young princesses, each who suffer from Ehlers-Danlos Syndrome, too. In April, she founded "The Zebra Network" - a 501(c)(3) non-profit that aims to increase advocacy, awareness, education and provide support for other patients with Ehlers-Danlos Syndrome. She now says, "It's no longer a question of IF we will change the world, it's a question of WHEN."
Despite the surgeries, despite the pain, despite the many complications and obstacles that have been thrown her way, Victoria has worked diligently to raise awareness about the chronic and invisible illnesses that riddle her (and others) body, and to provide hope to others in sharing how she remains positive and lives her life to fullest despite these challenges.
Please consider lending your support to Victoria and her family as they travel this journey.
To follow Victoria throughout her journey, please follow the Victoria's Warriors page on Facebook
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