Welcome to Gary's Mission to Remission!
Juvenile Dermatomyositis, a rare autoimmune disease.
Hi,I know ya don't know me! I have been following your blog for awhile and praying for your sweet boy and your family! Did the boy that you posted that passed away have DM? That is so sad! He was like 12 huh? I will pray for his family! I to have DM and struggle to get this in Remission! I hope that all who have this rare disease gets it in some sort of remission! This disease stinks, I have a blog and I'm trying to raise awareness through it! I am also talking to local senators in my state of WV to get some sort of walk organized to raise awareness... I purchase lots of ribbons blue/gold for DM colors and zazzle.com has lots or t-shirts, sweatshirts, hoodies, to wear too.... Summer :0)
Hi Summer!I left you a message on your blog as well. Justin actually had a Mitochondrial disease. I met him during one of our many over night stays this summer at Children's Hospital here in Seattle. When Gary was getting IVIG they would give him tylenol and benadryl which put my sweet little prince to sleep. It gave me the opportunity to spend a little time with Justin. He was so special. Thank you for praying for his family. I grew to really love his Mom. We often were delighted when we ran into each other in the hallways of the hospital. "What, your back?!" she would say to me. I would have to say "what, you never left?". Karen is his Mom and she was so brave. Thanks again for your support and love. Keep up the great work raising awareness. My husband and I actually do t-shirts so I have been trying for months to design some t-shirts to sell has a fundraiser for CUREJM. Still working on that one.
Ericka,It is so nice to meet you! I got cold chills and tears when I just read your comment about little Justin! I am so positive and outgoing through this disease. I was diagnosed a year ago and you have to be.... This disease stinks, it's rare, but we all are gonna get to the big R "Remission" sooner than later! That's great your hubby and you are designing shirts!!!! Let me know when they are ready and I will get some from ya! I try to do all I can for CUREJM! It's really near and dear to my heart! I have the adult version but I just can't imagine a litte one with it! My BFF's daughter has JRA and it's tough! Good luck and ya'll are in our prayers Summer :0)