We have put together this organization in order to raise money to help find a cure for Juvenile Dermatomyosits in Clara Tuma's honor. We don't want to see Clara nor any other child suffer from this disease any longer. We are hoping to raise money to help fund research to find a cure. Because this is considered an "orphan" disease, there is not a lot of grant money used to fund research. It is left up to the parents of the children and families of the children to try to help raise these funds. Thank you for participating in Cure Fore Clara. We appreciate all your support.
Learn About Clara
Clara is my 7 year old daughter, who was diagnosed with this rare and life-threatening disease. Since she was diagnosed she has undergone very aggressive treatment to try to put her in remission. She has had MRI's, muscle biopsies, swallow tests, weekly 3-day IV's of high dose steroids, weekly injections of chemotherapy medicine, and numerous daily medications. Clara is a fighter and has learned to be a very tough girl. She has worked with her child-life specialists at Scottish Rite hospital to help her understand every procedure and what it takes to get through this time in her life.
Learn About Chloe
When Chloe (now 7) was diagnosed on Jan. 11, 2010, she couldn't climb stairs, get into her car seat, get in or out of bed, couldn't get up from the floor without help, and fell all the time. After 2 weeks of treatment, she could climb several stairs before tiring out. Now, after 60 solumedrol IV infusions, 24 IVIG infusions, 72 chemo shots (and counting), and several other daily medicines, numerous blood draws for labs, 1 muscle biopsy, 1 swallow study, 1 MRI, several x-rays, an eye check, physical therapy muscle checks, many aches & pains and lots and lots of tears, she is doing really, really well! PRAISE THE LORD!! Chloe's last infusion was in January 2011. The next step will be to decrease her daily steroid in July if her labs are all ok and see how she does with the decrease. The goal is remission with no medicines to take and no symptoms. We are still years away from this however. The looming threat of it returning or a flare is always there.
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