While our kids look like healthy children, behind their smiling faces, lay painful diseases that have robbed each of them of their childhoods. And yet despite the pain and medical challenges they live with daily, they put on a smile and try to participate in life the best they can. These kids have become my heroes as they show me time and time again how resilient their spirits are despite the lousy hand life has dealt them. I think as you look at their faces and read their stories, you will see that they are truly remarkable kids.
- Barbara Granoff, TCAPP President
A Gallery of our Kids
Hi my name is Shira, I’m fifteen years old. I’m a dancer, and even though I don’t dance much anymore because of medical challenges, I will always be a dancer because a dancer is who you are not what you can or can’t do anymore. I have what I call the “rare disease trinity” EDS Type III, RSD, and Dysautonomia.
My name is Meredith and I am 16 years old. I have EDS and POTS. My service dog, Sami, attends school with me, helps me with mobility, and makes me very happy.
My name is Josh and I am 14 years old. When I was 11 my life changed dramatically after I was diagnosed with Pots and RSD.
My name is Eden and I am eight years old. I was diagnosed with Chiari when I was two and Ehlers Danlos Syndrome when I was four. I have been going to doctors since I was a toddler.
My name is Selkie and I am 7 1/2 years old. I started having pain about 2 years ago. Sometimes the pain is in my head and sometimes it is all over my body. When it hurts, I have to lay down and can't do things. Sometimes medicine helps the pain but sometimes it doesn't.
Hi, my name is Sara. I am 15 years old and have been sick for 5 years. I have Ehlers Danlos Syndrome,Dysautonomia, Gastroparesis and a very rare bleeding disorder.
My name is Roman and I am thirteen years old. I was diagnosed with Ehlers Danlos Syndrome at the age of nine. EDS has affected my life in many ways and causes my joints to dislocate easily. Sometimes it's really hard to feel like a normal kid, but EDS has made me stronger.
I have RSD, EDS, POTS, and Gastroparesis. I try to be an advocate for everything I have by fundraising and spreading awareness. I want to be a doctor when I grow up and I can't wait.
My name is Danica and I am 15 years old. When I was 13 my life changed dramatically. While it has been hard, I have still managed to maintain my grades and may try other things next year when I start High School. I am a strong believer that everything happens for a reason. I actually am thinking of opening up my own RSD clinic when I am adult so other kids do not have to suffer the way most RSD kids do now!
My name is Kori and I am 17 years old Six years ago I was diagnosed with RSD/CRPS. I have come to accept that I am not the same person I was before I was diagnosed. My life and the activities that fill it have changed, but the pain I experienced has given me strength and perspective, both of which I am grateful for.
My name is Julie and I was diagnosed with RSD/CRPS at the age of 13 after a knee surgery. My freshman year of college I fell on my arm and I developed RSD/CRPS in my left arm after that. I am now 21 years old and full time college student. I work hard every day to try and overcome these challenges and live as close to a normal life as possible.
Hi, my name is Hailey Brunson and I am 15 year old girl who manages my RND (Reflex Neurovascular Dystrophy)/AMPS(Amplified Pain) Syndrome. I was first diagnosed when I was 12.
My name is Becca and I am 19 years old. When I was 14, my life changed dramatically when I caught a virus and I never recovered. I was diagnosed with POTS, RSD, and later migraines, gastroparesis among other things. Being sick is tough, but it has made me a stronger person inside and out.
I'm Rosemary and I'm 20 years old. I suffer with Ehlers Danlos Syndrome and RSD. My experiences have inspired me to go into nursing.
My name is Matt, I'm 17 and I have RSD.
My name is Anastasia, and I am 15. I was diagnosed with POTS back in the summer of 2013, and we think that I have EDS, too. I've been a dancer all my life, and one of the hardest parts about being sick is not being able to dance. I am also a writer, and write about my experiences so people can understand what I am going through. I hope to be a nurse or physical therapist when I grow up.
My name is Lucky, I am 9 and I have EDS. I recently had surgery on my knee to stop it from dislocating, and I wear braces to help me walk. When I grow up, I am going to be a neurosurgeon during the week and a hairdresser on the weekends. My shop will be called "Salon Lucky."