Providing friendship, aide, hope and resources for those with Fahr's Disease.

Fahr Too Strong Stories

 

Success Stories
"Never let fear hold you back..."

"I am Colin Leypoldt. I am 15 years old. I was diagnosed with Fahr's disease almost four years ago. I started having Fahr's symptoms when I was four years old. I was 9 when I had my first MRI scan which showed a small amount of calcification in my basal ganglia, but then we had no idea what it was. Shortly before my 12th birthday we received the diagnosis. My parents didn't tell me for a while. I knew something wasn't right because I was having a hard time writing in school. My hand would cramp up. The summer before 7th grade I started having weird seizure like episodes.My doctors could never find a cause for them. I would have up to 70 a day; they would range from absence like all the way to grandmal. My muscle cramps got a lot worse too. My hand and foot would lock in weird terribly painful positions and I could not walk or move them. I had to be in a wheelchair some days because my balance was so bad I would fall over or run into walls. I was so tired all the time and could no longer do the sports I loved. Fahr's was taking ahold of me, but I wouldn't let it. I fought back. My parents took me to many, many doctors and specialists. We found medicine that helped with the symptoms and I started wrestling again. In 8th grade I went to middle school state and took 4th place at my weight. The calcifications in my brain continue to grow. I think slower, have more trouble at school and with ADL’s. I get really tired alot and have to take naps during school, and it takes me four times the energy just to do the simplest tasks like walk, but I won't let Fahr's hold me down. I still get very good grades participate in soccer and wrestling, and enjoy life. I smile alot even though the pain is severe most everyday. I try not to let the millions of doctor's appointments bum me out because the doctor's don't know what to do for me either. They have told me I should not be walking or talking, but I am! I am Fahr Too Strong! Never let fear hold you back, unleash your angry side and achieve the highest of goals!" 

Colin Leypoldt,  Loveland, Colorado





Success Stories
"I was diagnosed with Fahr's disease just after my 5th birthday."

"I am Dawson Leypoldt. I am 9 years old. I was diagnosed with Fahr's disease just after my 5th birthday. I have two older brothers who have it too. I don't know what it really is or what it does. I know I am sick alot and have had LOTS of doctor's appointments. I get really dizzy a lot and my head really hurts. I have trouble with my stomach and sometimes my neck twists and hurts real bad! I have a hard time at school. I cannot read or write. I had surgery so I wouldn't have accidents anymore. Now I can fart through my belly button. I am not allowed to play sports like my brother's, but I love to run and play. I see lots of therapists, Ms. Megan helps me write, tie, and open things. Ms. Karen helps me run and not get so tired; she also plays Wii tennis with me and has me do obstacle courses. Ms. Julie helps me with my speech, we play battle ship and I work on my r's. Ms. Janet and Ms. Amanda let me play out my world in sand and art. I learn about feelings and how to calm down. I am quiet and shy most of the time. I wear a special super suit to help me stay strong. I wish I could hang on the monkey bars like my friends. In school I have lots of teachers. They all are very nice and help me to learn. My favorite thing is to build with Legos and act out movies. I am a kid just like any other kid. I am Fahr Too Strong! " 

Dawson Leypoldt,  Loveland, Colorado





Success Stories
"I live life to the fullest..."

"I am Brock Leypoldt. I am 13 years old. I was diagnosed with Fahr's disease almost 2 years ago. My two brothers were diagnosed 2 years before me. I got diagnosed inorder to help researchers find treatments and the cause of our disease. I asked my parents to tell me if I had the disease. It helped me to know, but it is scary too. Iwatch whathappens to my brother's and I don't want that to happen to me. I had my firstCT scan when I was 11. It showed very mild calcifications in my brain. My recent scans have not shown any drastic changes which I am happy about. My symptoms are muscle cramping and locking, Tics, speech issues, cognitive processing slowing, and memory issues. I get extra help at school when I need it, mostly with test taking because I have a hard time remembering things. My parents make lists and send me reminders to help me.I take meds for the muscle cramps and it really helps. I had to do speech therapy for my voice and still have to practice everyday. I hate what Fahr's has done to my brother's and hope it never does the same to me, but for now I don't worry about it. I live life to the fullest, hanging out with my friends, playing competitive soccer, participating in swimming, basketball, wrestling, and track in school, and working hard to keep very good grades. I might have Fahr's Disease, but it doesn't have me. I am Fahr Too Strong! " 

Brock Leypoldt,  Loveland, Colorado