In the Spring of 2012, I was diagnosed with a very rare autoimmune disease called Juvenile Dermatomyositis, which attacks my muscles and tiny blood vessels. It can be very painful at times and causes me to break out in rashes. Since it only affects 2-3 kids per million, there is not a lot of knowledge about the disease, and there is a lack of funding for research. Without proper research, finding a cure would be almost hopeless.
However, instead of sitting back and feeling helpless, the family and friends of those affected by JM teamed up to create a nonprofit organization that depends heavily on grassroots fundraising. This foundation has not only been a huge support system for my family and I, but they are responsible for opening the first ever research center and published the only book, Myositis and You, that deals specifically with this disease.
Although it is frustrating, I am very thankful that we caught this disease early and I haven't been afflicted with any of the "serious" symptoms it can cause. However, many of the kids in my Cure JM community have not been as fortunate. No child should have to suffer, which is why I want to take back some of the control that was taken away from me and help fight for a cure.
No matter what, I know God will use this terrible disease to make me a stronger person and more sensitive to the needs of others. I have faith that I will get through this and use my experience to help others. Please keep me and other JM patients in your prayers, and if you are able to donate or contribute in any way to help make finding a cure reality, it will be greatly appreciated by many.
Thank you for visiting my fundraising page! Donating through this website is simple, fast and totally secure. But some other easy ways you can contribute are:
* Sign up on www.igive.com to help the Cure JM Foundation. There are hundreds of stores that have agreed to donate a portion of their proceeds when you make an online purchase from their company. It is quick, simple and free for you!
* Stop by our bakes sales on September 15th at Mercy Church Trade Days & Gator Fest.
* Visit the Chic-fil-a on Garth Road in Baytown, Texas on my Spirit Nights (Aug 22, Sept 26, Oct 24 and Nov 28) between 5 and 8 pm & tell them you are supporting Team Hudson. 20% of your purchase will be donated to the Cure JM Foundation.
* Join us for our Benefit on March 2nd in Mont Belvieu, Texas (5K, silent auction, BBQ plates, bake sale, raffle, and entertainment by the Al White Band).
* In October, swing by PSI Motosports in Kemah, Texas to the Cars for a Cure event (dyno day, BBQ, car show & bake sale).
- We also have people working to set up various bake sales, read-a-thons, a mail out system, etc.
Many thanks for your support - and don't forget to forward this to anyone who you think might want to donate or help with fundraising too!
FOR MORE INFO, VISIT firstname.lastname@example.org
More specifics about my battle with JDM:
As a result of my disease, my entire lifestyle has changed. At one time, I loved the outdoors and was very active. Now, I need help getting up and down off the floor, I can't sit on the floor unless I am leaning on something for support, and walking can become very tiring and painful for me. There are times I have trouble lifting my drink to my mouth or maintaining control of my neck/head when playing. My voice is very weak and sometimes I choke on my food. My skin is covered in rashes and because the tissue is breaking down, I am developing really painful ulcers. I also have these white spots under my skin where my fat tissue has become inflamed. Because my disease is very sensitive to UV lighting, I have to be very careful outside and around certain types of lights.
My doctor said I am on a 2-3 year treatment plan. The first 6 months are very intense. However, 90-95% of children go into remission during this time. Currently, I take 7ml of Prednisolone and 3ml of Plaquenil each day. I go once a week to a clinic at Texas Children's Hospital to receive an infusion and let them take blood and urine samples. They give me Zofran, Solu-Medrol, Leucovorin and Methotrexate each time I go. I also take IVIG once a month. But the good news is that my lab work shows improvement each week, and I am starting to show some physical improvement too. I know we can beat this with God's help, so please remember to keep me in your prayers!