Kelly Fights Back!
Donation protected
It was less than one year ago that Kelly Jones (14) was a healthy, strong cheerleader competing with her squad at the Pop Warner Nationals in Orlando at ESPN's Wide World of Sports. All 2013 fall season Kelly battled migraines that were becoming more frequent and more intense than they had been throughout the previous two years. These migraines ended up being one of the key indicators that led to one of Kelly’s two rare chronic diagnoses, Intracranial Hypertension (aka pseudo tumor cerebri). Kelly’s migraines were being caused by tremendously high levels of cerebral spinal fluid pushing down on her brain that caused severe pain, created a "whooshing" sound in her ears, increased pressure behind her eyes, and more.
After multiple hospitalizations and spinal taps to receive this diagnosis, Kelly was hopeful things might start looking up with a treatment plan, however, it was then discovered that Kelly's resting heart rate was consistently high at over 120 beats per minute at each doctor visit. Kelly started experiencing black-outs when she would stand-up, and began having to fight chronic, debilitating nausea and severe chest pain on a daily basis. Her heart rate continued to climb, and symptoms continued to worsen, leading doctors to the second diagnosis of Dysautonomia or POTS (Postural Orthostatic Tachycardia Syndrome), which is a condition that affects the autonomic nervous system.
Today (December 2014), Kelly's heart rate sometimes reaches 175 beats per minute while resting, and jumps an average of 50 beats higher each time she attempts to stand which simultaneously causes her blood pressure to drop. Kelly is currently unable to walk or eat on her own. She receives nutrition solely through NJ tube feedings, and is awaiting the installation of a subcutaneous port for hydration & medication purposes. Her condition has now reached a critical point with her doctors insisting on her admission to a local inpatient facility at Shands Hospital located in Gainesville, FL while she awaits acceptance into a nationally recognized treatment program such as Mayo Clinic, MN or Cleveland Clinic in Ohio. Once at a specialized treatment facility, she will undergo a minimum 3 week program specifically formulated for the treatment of Dysautonomia.
As doctors began reaching diagnosis, and as Kelly’s symptoms have unfolded over the course of the past year, treatments have included alternative medicine such as herbal blends, essential oils, therapeutic acupuncture, pain acceptance conditioning, to intracranial pressure monitoring with a temporary lumbar drain, several spinal taps, countless MRIs & scans, along with thorough cardiac, rheumatic, gastric & neurological work-ups that all included various medications. As Kelly’s physical state has continued to digress, it is clear that Kelly needs the assistance of the best medical teams in the country to help her fight these debilitating diseases. Kelly has not experienced a sustained pain level below an "8" on the pain scale since Jan 25th, 2014.
It is with Kelly’s cheerleading spirit that we are all pulling together to rally on Kelly’s behalf to help her receive the best specialized care available. The way that each of you reading this can help is through the continued positive thoughts, prayers, emotional support to Kelly’s family, and contributions. Contributions will be used to help cover airfare to medical facilities, lodging at the places where it is not provided, meals, household family expenses as Kelly’s mother accompanies her to obtain care (Kelly is one of three children in a single parent household), and all of the many expenses that add up when caring for a chronically ill child. Your consideration is deeply appreciated by the entire family including Kelly (14), her older sister Cassie (15) and her younger sister Julia (12).
After multiple hospitalizations and spinal taps to receive this diagnosis, Kelly was hopeful things might start looking up with a treatment plan, however, it was then discovered that Kelly's resting heart rate was consistently high at over 120 beats per minute at each doctor visit. Kelly started experiencing black-outs when she would stand-up, and began having to fight chronic, debilitating nausea and severe chest pain on a daily basis. Her heart rate continued to climb, and symptoms continued to worsen, leading doctors to the second diagnosis of Dysautonomia or POTS (Postural Orthostatic Tachycardia Syndrome), which is a condition that affects the autonomic nervous system.
Today (December 2014), Kelly's heart rate sometimes reaches 175 beats per minute while resting, and jumps an average of 50 beats higher each time she attempts to stand which simultaneously causes her blood pressure to drop. Kelly is currently unable to walk or eat on her own. She receives nutrition solely through NJ tube feedings, and is awaiting the installation of a subcutaneous port for hydration & medication purposes. Her condition has now reached a critical point with her doctors insisting on her admission to a local inpatient facility at Shands Hospital located in Gainesville, FL while she awaits acceptance into a nationally recognized treatment program such as Mayo Clinic, MN or Cleveland Clinic in Ohio. Once at a specialized treatment facility, she will undergo a minimum 3 week program specifically formulated for the treatment of Dysautonomia.
As doctors began reaching diagnosis, and as Kelly’s symptoms have unfolded over the course of the past year, treatments have included alternative medicine such as herbal blends, essential oils, therapeutic acupuncture, pain acceptance conditioning, to intracranial pressure monitoring with a temporary lumbar drain, several spinal taps, countless MRIs & scans, along with thorough cardiac, rheumatic, gastric & neurological work-ups that all included various medications. As Kelly’s physical state has continued to digress, it is clear that Kelly needs the assistance of the best medical teams in the country to help her fight these debilitating diseases. Kelly has not experienced a sustained pain level below an "8" on the pain scale since Jan 25th, 2014.
It is with Kelly’s cheerleading spirit that we are all pulling together to rally on Kelly’s behalf to help her receive the best specialized care available. The way that each of you reading this can help is through the continued positive thoughts, prayers, emotional support to Kelly’s family, and contributions. Contributions will be used to help cover airfare to medical facilities, lodging at the places where it is not provided, meals, household family expenses as Kelly’s mother accompanies her to obtain care (Kelly is one of three children in a single parent household), and all of the many expenses that add up when caring for a chronically ill child. Your consideration is deeply appreciated by the entire family including Kelly (14), her older sister Cassie (15) and her younger sister Julia (12).
Organizer
Katie Robinson-Jones
Organizer
Dunnellon, FL
