Avary's Story: Avary began showing some significant loss of gross motor movement (inability to climb stairs, get up off the floor, get herself out of bed, and constantly being tired) in March 2016. Our little girl's life veered from the normal day to day craziness to frightening almost overnight. After a visit with our pediatrician where we were referred to a neurologist at the University of Iowa. Avary underwent several blood tests and two MRIs as the doctors were trying to determine what could be causing her regressions. After being seen by two different neurologists and a rheumatologist, she received a diagnosis and treatment plan on August 11th, for Dermatomyositis (a disease that impacts three out of one million kids). She was admitted to the University August 12th-14th to begin treatment, her treatment plan requires us to spend one day a month at the University to receive an IVIG infusion along with the daily/weekly medications she is taking. Depending on how her system responds to the variety of medication she is currently taking, she could be on the medications for 3-5 years. While we are so thankful that there is a treatment that will manage the symptoms of this disease, we are saddened to find that there is no cure for this disease. Within a month of her initial treatment we saw remarkable improvements in her ability to be more independent in daily activities, not to mention, she began riding her bike again, she was able to go down a slide without someone catching her, she can ride her scooter, jump on a trampoline, and do most of the things other 6 year olds are able to do. It hasn't been easy and the side effects are difficult to manage but she is a trooper/fighter. She is getting stronger everyday and for that we are truly blessed. She has had such a great support system of family and friends to help keep her spirits up. We wanted to take a moment to update everyone and to thank all of you for your thoughts and prayers as we go through all of these changes in her life. She is so lucky to have all of you!! With all of the progress that she has made it is our continued hope that there will someday be a cure for this disease. Cure JM is currently the only funding source that soley focuses on funding research for Juvenille Myositis. Therefore, I am reaching out to all of you, on this National Day of Giving, to ask that you help to support finding a cure!!
Thank you for considering to donate to help fund research for a cure for Avary!
Alan & Heather Mouchka
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