Our sweet Ruby was diagnosed with Juvenile Dermatamyositis in April of 2015. Once the shock wore off, I learned how to pronounce this rare disease and after an emotional hospital visit we realized this isn't going away. Her twice daily meds and weekly chemo shot keep her disease at bay and have allowed her skin and muscles time to heal. She's swallowing easier (she was choking on her food before treatment), she's running and riding her bike (she couldn't climb in and out of bed), she plays (instead of watching due to exhaustion), and most importantly her strong spirit is back! I don't share with everyone the emotional and physical pain that Ruby deals with on a daily basis since this disease attacked her little body. I often see the girl who never napped slumped over asleep in the backseat of the car. My cooperative five year old became a steroid rage ridden 6 year old shortly after her birthday. How do you keep a 6 year old little girl who loves to jump on the trampoline, swim, ride her bike and play outside out of the sun???? This has been a huge adjustment but we're making it through and some days are better than others. Praise the Lord Ruby's body is responding to the medicine currently. So many are not as fortunate! Our hope and prayers..... her body will continue to respond to medicine until she can be weaned off and even though there is no cure there's hope in remission. We are so thankful for medical research and advancements. She certainly wouldn't have the same percentages 20 years ago. Please consider donating in her honor for further research so that she can live a long and healthy life!
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