Thank you for visiting my fundraising page! My hope is to raise funds to help cure Juvenile Dermatomyositis so other kids don't have to suffer like I, and so many of my JDM friends, have. Being 4 is supposed to be FUN!
I was born on May 18th, 2006. I have an amazing twin sister Caroline. We were both born 9 weeks early and we were in the NICU for 5 weeks after we were born. Mom and Dad were so scared but they were so happy because we were healthy but super small.
In early 2010, I started feeling badly. My legs were hurting a lot, I was vomiting and choking on my food and we did not know what was happening. I had started soccer and mom and dad thought that was why my legs were hurting so badly. Can you believe that? Then I got a really bad rash on my face, feet, fingers and toes. It looked really bad and people thought I had a bad sunburn. All of the suddden, I could hardly get up the stairs in the house and I had no energy and was tired a lot of the time. I went to several doctor's appointments and got poked a ton of times before the doctors figured out I had this horrible disease called Juvenile Dermatomyositis. We were rushed to Riley Hospital for Children in Indianapolis and the rest is history. You can see my story at: www.caringbridge.org/visit/katherinealderfer
Did you know there is NO cure for JDM? With all of the modern science in this world, we should be able to find a cure. Only 3 out of a million children are diagnosed with JDM every year. Because this disease is so rare, it is considered an "orphan" disease. Apparently that means that not enough kids are diagnosed with it to make a difference in the world of medicine.
Fortunately, there are a few researchers in the world who ARE focused on finding a cure. Hopefully, raising funds will help them find a cure faster.
Did you know that I can't even be in the sun? Did you know that the medicines that I take make me have mood swings and fragile bones? Did you know that my body is currently attacking itself and all of the muscles and other tissues?
Right now, I have approximately 8 fractures in my vertebra. I use a walker in the house and need to have a wheelchair to get around in other places. The disease has affected my stamina and I get tired really easily. The doctor's diagnosed me with osteopenia which means that my bones are very weak and can fracture easily. I go to physical and occupational therapy. We are worried that my feet and legs are turning outward and praying that I won't need to have my legs put in casts. I know some other kids that have had that done and they say it is very painful!
Did you know that although medications can help alleviate the symptoms of JM, the disease has NO cure? The primary medications used to treat the symptoms of JM are immunosuppressants, corticosteroids and chemotherapy. These medications themselves can cause severe side effects, making JM challenging to treat.
Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.
Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!