Join us for the 2nd Annual "Walk Strong to Cure JM" Minnesota featuring a short family fun walk, food, activities, entertainment, games and prizes. It will be a fun family event for all ages.
Our Why -
Avary was a typically developing girl until the age of 4 years 6 months of age. In March 2016 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). Our little girl's life veered from the normal day to day craziness to frightening almost overnight.
We began our journey of seeking answers with a visit to her pediatrician (Dr. Reinertson). Following this visit he referred us 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 11, 2016, for Dermatomyositis (a disease that impacts three out of one million kids). She was admitted to the University August 12-14, 2016 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.
Her plan of treatment all depends on how her system responds to the variety of medication she she was prescribed; which consisted of a daily steroid, weekly methotrexate, monthly steroid pulses, and IVIG infusions (along with medications to combat the side effects of these meds; folic acid and famotidine), we were told she would be on the medications for 3-5 years, if her body responded well (she is currently starting her 3rd year). While we were thankful to hear that there is a treatment that will manage the symptoms of this disease, we are saddened knowing 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 kids her age 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 is currently very active and participates in gymnastics, soccer, softball, and previously dance. She has had such a great support system of family and friends to help keep her spirits up.
We want to thank you all for your continued 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. Which is why we are again participating in a fundraiser for CureJM.
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 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!
This event is free and open to the public.
University of Minnesota - Coffman Memorial Union
300 Washington Ave S.E. Minneapolis, MN 55455
East River Road Garage
385 E River Parkway, Minneapolis, MN 55455
Note: There is a $6.00 parking fee.
All proceeds benefit Cure JM Foundation, a non-profit dedicated to finding a cure for Juvenile Myositis, a life-threatening disease which causes the body’s own immune system to attack healthy cells and tissues. It can affect virtually any system of the body, the heart, lungs, skin, muscles, and more. And there is no cure....YET!
But with support from friends and family like you, we’re getting closer to better treatments and a cure.
Your support now will keep that momentum going.
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