Fight for POTS

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Dear Ms. Madeline Bell,

My name is Emma Gilmore. I am 17 years old and I am from Marlton, New Jersey. When I was seven years old my four year old brother Jackson started to become sick. He would get headaches, stomach aches, which you think could be normal to some extent. As the years went on it got worse and worse. He could not make it through the school day. He either couldn’t even manage to go or leave early. He could no longer play sports or do long periods of activity. My little brother was different than everyone else. He had to drop out of school because he could physically not complete the second grade. The doctor visits were endless. My parents were stressed beyond what anyone could imagine. The worst part, is that although my parents and I could see him struggling it was hard for an outside perspective to see it. Doctors could not figure out what was wrong with him. Some doctors even said my parents were lying and that nothing was wrong with him. Jackson was first diagnosed with abdominal migraines. They said by around age nine or ten he would grow out of it, that this was something that we would get through in time. So as a hopeful little girl, I waited anxiously for Jackson’s ninth birthday to come around. Through that time he got worse and worse. His birthday came around and still no improvement. That is when my family was suggested to see Dr. Boris at Children’s Hospital of Philadelphia. It was February 12th, 2013. I remember that day. I remember my parents coming in my room and handing papers and explaining to me that Jackson wasn’t getting better. That the hope I had been holding onto for five years had vanished. He had been given a whole new diagnoses, which was Postural Orthostatic Tachycardia Syndrome (POTS). POTS is a form of dysautonomia. Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. With POTS specifically, it can cause some patients to have fairly mild symptoms and can continue with normal work, school, social and recreational activities. For others, symptoms may be so severe that normal life activities, such as bathing, housework, eating, sitting upright, walking or standing can be significantly limited. Physicians with expertise in treating POTS have compared the functional impairment seen in POTS patients to the impairment seen in chronic obstructive pulmonary disease (COPD) or congestive heart failure. Approximately 25% of POTS patients are disabled and unable to work. Researchers found that quality-of-life in POTS patients is comparable to patients on dialysis for kidney failure. My life had changed forever. The past five years have been hard. Without Dr. Boris we would not have been able to make it through. He has helped Jackson through POTS. Jackson is living with POTS and always will be. He has been diagnosed with other things that make the POTS worse over the years. He has been in the hospital for days, weeks, and even months at a time at the Children’s Hospital of Philadelphia. About four years ago we had to get a service dog named Bodie. He tells us before Jackson become sick so that we can give him the proper medication to try to shorten the pain, nausea, dizziness and all of the other things that come with living with POTS. POTS had caused Jackson not be able to have a normal childhood. He is fourteen years old now. He is a freshman in high school. He doesn’t get to do the things that every other teenage boy gets to do or experience. There are so many more things I could tell you about how POTS has affected my brothers life, my parents life, and the life of me and my other ten year old brother. I could tell you about the fear, the stress, the port connected to his heart that if it gets hit he could die. I could tell you about the feeding tube, the times I have to help my mom keep Jackson still while she sticks him for his IV fluids. I could tell you how tired and drained my parents are, like how my dad gets up at four in the morning, every morning, to hook my brother up to IV fluids just so his day might just be a little better. Sometimes it works, but sometimes it doesn’t. I could tell you about how my mom has had to change jobs and work crazy hours so that she can be there for Jackson every second of everyday, whether that be at the hospital or at home. All while still making money to keep us going. My list could go on forever, but I sure can tell you how much worse it could be if you take away the POTS program at Children’s Hospital of Philadelphia. Most of my family's finances go to medical bills. My parents pay thousands of dollars a month for Jackson. Without Dr. Boris my family will have to travel across the United states for doctors appointments year round. That is more money out of pocket for plane tickets and travel costs just for a doctor's appointment. This is because there are very few pediatric POTS experts in the United States. If you think just finding another doctor is easy, you are mistaken. POTS is more common than anyone thinks. 1 out of 100 teenagers are impacted by POTS, yet there are not many doctors to help. This causes a waiting list for patients. This causes delayed diagnosis, prolonged suffering, and increased disability. For example, Dr. Blair Grubb in Ohio has a current waiting list of almost four years. You see your very wrong decision of shutting down the POTS program does not only affect my family or the health of my little brother, but hundreds of patients and families. Dr. Boris built up one of the major pediatric POTS centers in the United States. He sees hundreds of POTS patients. He is considered the leading expert on pediatric POTS. You have not only destroyed years worth of research and dedication, but cut off the only way to help of hundreds of sick children. You also proceeded to only cut out POTS patients. You allow cardiac patients without POTS only to see Dr. Boris. How is that fair? The purpose of doctors and hospitals is to heal. It is to save lives and to help people. How do you consider yourself the president of a place meant to help children specifically and yet decide to turn sick children away? How could you keep a child suffering when you have an expert in the palm of your hand? I really suggest you take a look at your career and your decision to stop helping people. I really hope that you take into consideration how POTS had affected the life of my family and how so many others are experiencing it possibly worse. I really hope you make the right decision by allowing Dr. Boris to see his POTS patients and keep the POTS program at Children’s Hospital of Philadelphia.

Sincerely,

Emma Gilmore

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