Our families’ days were always filled with sunshine prior to 2014. Our daughter, Kameron, was the typical embodiment of that “all-American” girl. She was a unbeievable ballet dancer, Lake Norman High school cheerleader, a friend to many peers in school and active in her Mooresville community. Just envision our all-around healthy active teen! For the past two years, we have been grieving her once strong body and healthy attitude, while facing several life-altering diagnoses. Additionally, hospital bills are mounting and the heavy decision to allocate finances for experimental treatment badger us daily.
Kameron celebrated her 15th birthday just as most typical teenagers do – being with friends and family. As her spring yearly “well visit” (health physical) arrived, we sat in the doctor’s exam room listening to their advice to administer this newly available (and highly marketed!) HPV vaccine. “It’s safe!”, they stated. I remember listening; but, distinctly having an unusual, reluctant feeling (the “mommy gut”) to agree to the shots, but wondered to myself…”Hey, am I just being overly cautious?” We agreed to wait a little longer. In November I took Kameron for her first gynecology appointment. Again, there is a recommendation to give her the HPV vaccine. This was the second opinion we had received. I was starting to feel guilty that I was over reacting. Shaking it off, we trusted her doctor’s opinion – I agreed and signed off on the sheet of paper for the nurse to administer the first round of the Gardasil shot. There are three of these injections that have to be received for a complete inoculation.
Her Health Journey
In just two short months post-injection, January 2015, Kameron began experiencing significant hand tremors. These tremors would escalate to the point where she would drop anything she was trying to hold / carry. July arrived and the hand tremors had become so bad that she could no longer drive herself anywhere and working a part time job was not a viable option. Do you remember your days of being a teenager? Hanging out with your friends? Being employed to earn a little extra money? Assisting your family with house hold chores? Those events were no longer her norm. To a teenager, this non-social aspect triggered embarrassment. That’s the double prong to any chronic disease – enduring the disease, as well as hurdling all the psychological issues that plague you. Kameron also became severely depressed. It broke our hearts seeing her like this. Our once vibrant and exciting child was no more. As parents, we yearned to take away all her pain and suffering.
September brought us some “good” news. When indivduals/families deal with illnesses/disease, any solid diagnosis we definitely deem “good” – because at least now there’s a better starting point and you can begin a strategy of management or healing. Our present neurologist evaluated and diagnosed her with Essential Tremor Syndrome. (want to learn more? Essential Tremor https://www.essentialtremor.org/ .) This “type” of tremor is typical in those 40 years of age and over. Remember – Kam’s only 16!
By October, she started having seizures. We reached out and were lucky to get her admitted to the UNC - Chapel Hill Hospital for a week with a dedicated research team evaluating her case. She now couldn't even walk on her own and, at times, couldn't feed herself, hold a drink or brush her hair. The only response we got was that it was anxiety and stress related. That only "stressed" her more! This poor child felt like no one was listening or believing her…
After coming home from UNC, Kameron needed to leave school and it was ultimately deemed necessary for her to become “medically home bound” junior year. She could not possibly sit through eight hours of instruction each day. The next progression of the disease was leg neuropathy (searing pain in her legs) and she had to depend on a walker, and then a wheelchair for any type of mobility out of her bed. After months of therapy, five to seven different prescription pills a day, four or five different specialists, countless visits to the ER and lots of tears and prayers, Kameron is fighting to get her life back and absolute in trying to redefine our “all American” girl. All collective opinions and sympathetic evidence points to the HPV vaccine negatively affecting her immune system.
Her Hopes and Goals
Thanks to the persistent research and unwavering assistance from her primary doctor and neurologist, Kameron has been “officially” diagnosed with POTS, Postural Orthostatic Tachycardia Syndrome, a condition which is believed to be secondary to her autoimmune problem from the Gardisil shot. POTS affects all involuntary actions in the body. There are many symptoms and problems that stem from POTS throughout various systems in the body. Currently, the doctors feel that we are just treating Kameron's symptoms and not moving forward towards any type of “healing” or “reset”. The consensus is that since her body is constantly addressing multitudes of systemic issues that it stays in a continual state of "fight or flight". Daily, she is still dealing with: tremors, neuropathy pain, headaches, chronic fatigue, severe nausea, brain fog, memory loss, dizziness and racing heart palpitations. In addition, any general illness or injury is at least twice as intense for Kameron as it is for the average person.
We want desperately to supply Kameron the tools and help to manage her POTS diagnosis without more drugs so she can learn to live as typical a life as possible. After in-depth research, we have been fortunate to find a wonderful treatment center in Dallas, TX. POTS Treatment Center ( www.potstreatmentcenter.com ) will assist Kameron in gaining control of her autonomic nervous system via techniques and directly assist in “resetting” her system to keep her as healthy as possible. This center is dedicated and specializes in the diagnosis of dysautonomia (POTS). Her doctors are encouraging the treatment, but neither mine nor Michael’s insurance will cover the cost because it is considered "out of network".
This is where we so need our family and friends to assist us… We know we can’t do this on our own and must request your help so we can enroll Kameron, fly her to Texas and begin this two-week intensive treatment program. Any amount that you are able to donate is greatly treasured.
All monies donated go strictly for her participation in this treatment program and our travel and living while there. If we are successful with accomplishing the funds for Kameron (prior to her turning 19), our family will qualify to stay at the Ronald McDonald house.
Michael, Kameron and I would like to extend our deepest appreciation to all who are able to contribute to Kameron's Kause.
Thank you for your consideration and if you can not donate at this time, your prayers for her are greatly appreciated.
Michael, Robin, Alan Michael and Kameron Hilton
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