Temple University Students who were treated at The Children’s
Hospital of Philadelphia
When I was younger, soccer was my life. It was always the sport that I was best at and win or lose, I just loved to play the game. It’s funny looking back at it now, that the sport I loved so much, almost ruined my life.
When I was 13 years old, I was on a local travel soccer team as well as my 7th grade middle school team, so my life basically revolved around soccer. While I was playing a night game in late November, I went to head the soccer ball, but the ball hit the wrong part of my head and I fell to the ground. I don’t remember anything that happened afterwards other than laying in the back of my parent’s car while driving home from the game with an excruciating headache. I kept getting really bad headaches after this so I went to a sports medicine doctor and told her what was going on and she told me that I had a concussion. I found out that I had actually gotten multiple concussions throughout the year, but each one went undiagnosed so I kept playing soccer, making each concussion more and more serious. My doctor pulled me out of soccer for the rest of the year in hopes that I would be able to return the following year, but I never did. She prescribed me a multitude of different medications to help with my symptoms, but months passed and I still wasn’t getting any better. I went and saw a number of different doctors, but none of them had any solutions to help me other than prescribe me stronger medication to numb the pain. I was starting to feel like I was never going to get better and I would never be “normal” again. It wasn’t until I went to see a CHOP neurologist that I started to feel somewhat optimistic again. She told me that the reason I wasn’t getting better was because I didn’t just have a concussion or even post-concussion syndrome, but I had a traumatic brain injury and I needed a more intensive treatment. It was the first time in 2 years of seeing multiple doctors and trying to treat my injury that a doctor didn’t just throw prescription drugs at me, hoping that they would make me feel better. I continued to see her for years and even though I had many set backs and new injuries, neither her nor CHOP ever gave up on me. They not only were always there to help with my recovery, but they also encouraged me to not give up on my dream of living a normal life again. At one point during my recovery I was told that I would have a very hard time finishing high school and I would most likely not be able to go college or make anything of myself, but because of CHOP I am now a sophomore at Temple University’s Fox School of Business studying International Business on track to graduate with my class. Even though I still experience TBI symptoms now and then, I finally have control over my injury and it no longer dominates my life.
CHOP has made me into the person I am today and I will never be able to fully express my gratitude for everything they have done for me and my family.
When I was six months old, I was having multiple seizures a day. My parents were unsure of what was happening at the time. The problem kept on persisting, so they took me to the doctor. The doctor told my parents not to worry about anything, that I was just having some digestive problems. They gave me medicine and told my mom to check up when I was finished with the prescription. However, a few nights after that appointment, the seizures kept on occurring. My mom did not believe that what the doctor said was true. She brought me to the hospital where I had to undergo multiple tests. They finally discovered that I was suffering with Infantile Spasms, a form of epilepsy. The doctors told my mother that nothing could be done, and that I would end up mentally ill for the rest of my life. However, she refused to believe that this was true for me. My parents refused to give up a fight that I was too young to fight myself. One night, my mother describes as horrific. She said that I had stopped breathing and she was trying everything in her power to help me. My parents called an ambulance and I was rushed to a nearby hospital where I was eventually stabilized and I had regained consciousness. I was eventually transferred to CHOP and treated there. Still, the doctors told my parents that nothing could be done, that I would suffer with this disease forever. However, my parents still did not give up. By this time, my growth and development had completely ceased. It was like I was moving backwards in mental development. I was unable to do things I should have been able to do by the time I was a year old. I stayed in CHOP for a long time, almost a year actually. There, I received treatment for something that seemed incurable. Suddenly, something changed. I started having fewer seizures, rather than almost 50 in one day. Eventually, the day came where I had my very last seizure. I was beginning to develop mentally. I started doing physical therapy where I began to learn basic things that I forgot how to do, such as crawl and hold a bottle. Those basic things then turned into bigger things such as walking and speaking. I am very grateful for CHOP as well as my parents for not giving up on my fight and allowing me to be where I am today, healthy and happy.
“You can keep sleeping” I hear the resident whispered over me, but it’s too late. The cold stethoscope is sending shivers down my back, I can hear the beeps coming from the IV pump, and the lights overhead have already flashed in my eyes. This is an occurrence called pre-rounds, because who does not love being woken up by a 6:30am physical exam? This is not a scenario children should be accustom to yet too many are. At age 20 I know this reality all too well. While the rest of my friends are woken up by their alarm clocks and iPhones, I am woken up by early morning blood draws and pre-rounds. I am just one of the hundreds of patients at the Children’s Hospital of Philadelphia who are woken up this way every year. And that is why I dance.
HootaThon raises money so even if a child is woken up by a doctor the rest of their day can be a little brighter. This is where the child life department comes in. In a hospital too often children have to grow up to fast, missing bits and pieces of their childhood along the way. The child life department helps make sure that every kid gets to be a kid. They plan activities for children who are stuck inpatient, provide art, music, and pet therapy, bring kids who aren’t allowed to leave their room fun toys to pass the time. During one of my long admissions last year I was really upset because I had to miss the first two weeks of classes. The childlife specialist on my floor hear this and asked me to help her with an activity for Celiac Education day as a distraction. When you are in the hospital it is the little things like having something to take your mind off missing class and not getting to see your friends yet that make all the difference. I dance for distractions.
I will continue to dance until no child is woken up by a cold stethoscope or for a blood draw. I will continue to dance until no child has to misses school or classes because they are stuck in a hospital room. At HootaThon we are dancing for a difference!
My name is Emilie Doyle and I am a junior Electrical Engineering student at Temple University. In 2008 I was diagnosed with systemic lupus at CHOP. Lupus is an autoimmune disease and it basically means that my immune system is hyper active, but instead of attacking bad things like colds or infection it attacks me instead. I was in 8th grade when I was diagnosed and it was a real struggle to find out what was going on with me. My ankles had swollen up and my pediatrician and local hospital did not know what to make of it. So they sent me to CHOP. After running what seemed like a gazillion tests, the wonderful doctors at CHOP told me my diagnosis but the care didn’t stop there. Even though I was only 12, they helped me to really understand what was happening in my body and helped me come to terms with my situation. The support that I have received from the doctors at CHOP has been truly phenomenal. It is not just a bunch of straight up doctors in white lab coats talking down to you because you are a kid; it is really like a family. I know that may sound a little weird or cliché, but that is really what it is like- a family.
The doctors really make an effort to get to know you, what you like and what you are interested in. My doctor at CHOP, Dr Sherry, is probably one of the coolest people I know, but he’s more than a doctor, he’s a friend. He knows that I love logic and word puzzles, so he will always have one ready when I go see him, to try to stump me. Likewise, I always try to bring one to stump him. I haven’t stumped him yet, but I am working on it.
When I was first asked to share my story I was really struggling about what I would write about, yes I have my personal experiences, but I wanted to talk about something more. And then it hit me- a really powerful image from one of the first times that I was at CHOP. I was in the waiting room for the emergency room, and it’s actually quite a lovely place. There is this great big atrium, splashed with all kinds of bright colors and many windows of rooms overlooking the atrium. I remember looking up and being amazed at what was on the windows. So many patients had taken to painting the window with all sorts of flowers, suns, car, smiley faces; you name it- it was up there. And then some of them just had tally marks. Rows upon rows of tally marks, with each mark signifying a week that they had been at CHOP. For me that was such an emotional moment to remember, that there were young children who had maybe spent more of their life in the hospital than outside of it. I was lucky. I only made it to one tally mark. I think of all that we have done for HootaThon and CHOP and am always reminded by FTK- For The Kids. But it is not just for the kids, it is for THOSE kids.
Because HootaThon isn’t about fighting cancer or illness. We have wonderful doctors and specialist for that. HootaThon is about fighting the negative feelings and emotions that kids get because of their conditions. The girl that thinks she is any less amazing, just because chemo took her hair. The boy that can’t even remember what it is like to sleep in his own bedroom, or be in his own house. The ability to be able to let kids just be kids again, that’s what HootaThon is about. HootaThon is about taking those tally marks and turning them into something wonderful- helping CHOP to treat kids first and fore mostly, as kids, while still being able to treat symptoms. Because a childhood is something too wonderful to miss out on
My name is Assunta Forgione and I am a senior history major here at Temple. At thirteen years old I was diagnosed with Type 1 Diabetes. I didn’t know that I was diabetic and went into a coma. My condition was so serious that my local hospital had to transport me by helicopter to the Children’s Hospital of Philadelphia. At CHOP the doctors said there was a small chance that I would survive, but that they would try everything they could. The doctors and nurses did try everything, because I woke from my coma the next morning. The doctors and nurses at CHOP spent the next few days teaching me to take care of myself with Type 1 Diabetes. I was not afraid to be in the hospital, because the doctors and nurses at CHOP are so caring and friendly. CHOP saved my life and I will always be grateful to them. They taught me that I can live a normal life with Type 1 Diabetes and follow all my dreams. I wouldn’t be at Temple today if it were not for the amazing doctors and nurses at CHOP.
I participated in Hootathon last year and it was the best experience of my life. It was a night that I could give back to the hospital that saved my life. A night that I could dance with my fellow students for all those that cannot dance. A night that I could share my story and hear others that are so similar to my experience at CHOP. Hootathon is way that we can all give back and make positive change in the world. I cannot wait to experience Hootathon again this year and raise money for CHOP so they can make more miracles happen
My name is Miranda Nolden and I am a nursing major at Temple University. Children's Hospital of Philadelphia has been a part of my life for basically as long as I can remember. I started seeing orthopedic specialists there when I was 9 years old because of an ankle sprain that never healed. This ankle sprain lead to weakening of all of my muscles and ligaments. After 15 broken and sprained bones (at separate times) due to everyday tasks such as walking, my orthopedic finally referred me to a rheumatologist named Dr. Sherry. Dr. Sherry diagnosed me with enthesits and RND. Enthesitis is basically arthritis in the muscles, tendons, and ligaments. This causes the muscles to become weaker, which was what was causing me to continuously sprain, strain, and fracture my ankles, wrists, and elbows. RND on the other hand, is reflux neurovascular dystrophy, or in other words, amplified pain. RND is a disorder that causes unbearable pain when doing simple tasks such as wearing a certain shirt. This happens because when there is pain, that nerve ending sends a signal to the brain telling the brain that there is pain. The brain then sends a signal to that nerve ending telling it to fix the pain. (That's normal). What isn't normal is that when a person has RND, their brain sends an EXTRA signal to the surrounding blood vessels telling them to constrict. This actually is painful, which then sends another pain signal, and the process continues to amplify. For two years after I was diagnosed, I tried to do at -home physical therapy that would help with the pain, and after two years of pain continuing to get worse, I finally decided to try the RND-program at CHOP. When I was a junior in high school, I was approved for the program. I left school for a month to be able to focus on my health improving. I was in an intense physical therapy program from 8am - 4pm 5 days a week. Although my pain got worse at first, and i couldn't move my arm for my whole 2nd week, by the end of my 4 1/2 week stay, I walked away with little pain, and I could actually walk without feeling pain. After being discharged, I went home with instructions to try to do as much PT at home that I could, which meant going to the gym almost everyday.
For about 6 months, I was keeping up with everything, and my pain was basically non existent anymore, and I was even discharged from the pain clinic! Then one day, I passed out while on the elliptical. I had previous heart issues, but never this serious. Dr. Sherry referred me to Dr. Boris, a cardiac specialist in POTS. Dr. Boris diagnosed me with Postural Orthostatic Tachycardia Syndrome in October of 2012. He said the reason why I was passing out all the time (not just on the elliptical, but every time I stood up) was because my heart rate couldn't fix itself when I moved because my nerve endings couldn't send the signals fast enough. Most people have an increase in their heart rate when they stand up from about 5-10 beats per minute, my heart rate increase 40-50 beats per minute within seconds when I stand up, or stand for too long. It also causes more stress on my heart which makes me more likely to have a heart attack. This caused me to again miss school and be on bed rest for about 5 months my senior year of high school. The doctors worked with my body to see what treatment was best for me. Although I still have to take it easy and take things slower than most people, I can live a normal life thanks to the breakthrough treatments at CHOP.
I am so thankful for all of the amazing doctors, nurses, and staff at CHOP for literally giving me my life back. CHOP has made me the person I am today, and one day I hope to work there to inspire kids like me to be the person they want to be!
My name is Sam Ferguson. I just transferred to Temple this semester after receiving an AAS in Fashion Merchandising Management from FIT. I’m a newly declared Advertising major. One of the reasons I decided to come to Temple for my BA was because of their involvement with CHOP.
I have a very special place in my heart for CHOP. When I was two (in 1996), I started to swell up to the point where my shoes wouldn’t fit on my feet. It took awhile for the doctors in my wonderful hometown of Scranton, Pennsylvania to figure out exactly what was wrong. They performed blood work and were able to tell that it was kidney related so they immediately sent me to CHOP to meet with a nephrologist. As soon as we met the nephrologist, Dr. Kaplan, he knew what was wrong with me the minute he looked at my blood work and by just looking at me. I was diagnosed with minimal change nephrotic syndrome. Simply put, minimal change nephrotic syndrome is an allergic reaction in the kidneys. What happened was my kidney filter was leaking protein and storing fluid in my body causing me to swell like a large balloon. For pretty much all of my life, I was on large doses of a steroid called prednisone. I made countless trips back and forth to CHOP with a couple of hospital stays in between. Even though the steroids helped my kidneys work, I dealt with terrible side effects. I spent most of my childhood being paranoid about my weight because of how swollen I was. I was always hungry to the point where I would plan out my meals days in advance. I was on a restricted no salt diet because the salt would make me swell even more. I had terrible mood swings that that made me question how my parents were able to deal with me. Exercise was impossible because I was always out of breath. My last run in with a relapse was in 2009. I spent the end of my sophomore year of high school taking large doses of prednisone. Since then I have been in a remission state. I’m not sure if I outgrew the disease, but only time will tell. I’m still dealing with side effects today. The large doses changed the texture of my hair, nails, the enamel of my teeth, and even ruined my eyesight.
Even though I had a rough time dealing with my diagnosis, the staff at CHOP was always more than nice. They were always there to keep my parents calm and me too. I remember the first time walking into the atrium and being amazed by the large “clicky-clangy machine,” as I called it. I remember always being tempted by the McDonalds that used to be attached to the hospital. I remember I was in the hospital for New Years when I was in first grade and the nurses brought my parents and I sparkling cider. I could easily have had terrible memories from being in and out of a hospital for many years, but I only seem to have good ones.
I am forever grateful for all the care I received at CHOP and especially from my doctor, Dr. Kaplan. HootaThon presents such an awesome opportunity to really make a difference in the lives of the patients. CHOP has done so much for me, and I am so excited to finally have the opportunity to give back to them!
I’ve been seeing specialists at CHOP for pretty much my whole life. I’ve had a handful of hospitalizations and surgeries, quite a few ER visits, and hordes of outpatient appointments. Right now, I see CHOP doctors monthly. Anywhere else, this reality might be pretty bleak; Children’s Hospital Of Philadelphia actually makes it almost-fun to go.
“Going to CHOP” for outpatient was an institution in my family; it meant my sister and I got a day off school and lunch from the now-gone McDonald’s in the lobby. Inpatient was a little different, but even as my mom and I would tell my sister and dad where we were headed, there was always an aura of calmness knowing that I would soon be getting the absolute best care from doctors who have followed me for years.
I did a lot of growing up at CHOP; it was where I learned how to Heely at eight, got a Facebook at 12, told my doctor my college plans at 18, and spent some of my first semester at Temple. The Child Life Department exists so that CHOP can give kids like me a childhood. On Halloween, they brought me a costume in the hospital room I couldn’t leave. When I wasn’t allowed out of bed for a week, they brought me arts and crafts supplies and Hannah Montana DVDs.
Child Life made me feel like I had a friend in the hospital, which is so invaluable when your only social contact is your mother, 24/7, for weeks on end. They’re someone who gets that you’re sick, so you can’t do everything, but they work with what you can do. You can joke about your illness with them while you collage magazine pages on the days you can’t get out of bed, and celebrate with them on the days that you can.
I dance for the small victories, for the spirit and resilience inside each “CHOP kid,” and so that more kids can have childhoods. I dance because I might not be able to without Children’s Hospital of Philadelphia.
Over nineteen years ago I was diagnosed with Tetralogy of Fallot, a congenital heart defect. Essentially, this condition causes four problems with the anatomy of a heart: ventricular septal defect, overriding aorta, pulmonary stenosis, and right ventricular hypertrophy. My parents were fortunate enough to be referred to Dr. Sharon Weil, a pediatric cardiologist, who began taking care of me—and my heart—even before I was born. One of the best things she did for me was to send my parents to meet with Dr. Thomas Spray at The Children’s Hospital of Philadelphia. Dr. Spray surgically corrected my heart when I was 3 months old and weighed only 8 lbs. I am grateful to him for fixing my defect so well, that I probably will not need to have another surgery like some people with my condition tend to need. Although I may not remember this ordeal, my parents tell me about the great care I received from the doctors and nurses at CHOP. CHOP and Dr. Spray are absolutely the reasons I am here today and thriving.
I was able to dance at a local studio from the age of four all the way until I graduated high school. I even earned the opportunity to dance competitively on my studio’s Performance Ensemble. If Dr. Spray had not fixed my heart as well as he did, I would never been able to accomplish these things and find my passion for dance. Now a sophomore studying Media Studies and Production at Temple, I have been able to give back to CHOP and express my gratitude in several ways. I participated in my first HootaThon and loved every second of it. The fact that this event was dedicated to CHOP and the local community was very important to me. At HootaThon, I met three other Temple students who were my age. We all had our hearts repaired by Dr. Spray. Not only this, but a few of the guest speakers and their families were also treated by Dr. Spray. It was incredible and surreal to connect with these students and guests, and think one doctor cared for all of us 15 to 20 years apart.
I am continuing to give back to CHOP by recently beginning an internship with them. I am the Surgical Video Editor Intern with the department of Surgery and division of Urology. With this new position, I will be applying skills learned at Temple to edit surgical videos for a case study. The doctors, employees, and my fellow interns could not be more kind and helpful. I am so grateful to have found this opportunity, and I am looking forward to working with CHOP for a year or more.