Kinlee Hynes wrote -
Kinlee was diagnosed with Juvenile Dermatomyositis the week of her third birthday. She had a rash over various joints for about a year before the diagnosis. It was initially treated as eczema. We noticed some abnormal capillaries around her cuticles, which made us feel something more was going on. Thankfully, we ended up under the care of some wonderful physicians. We saw a dermatologist who recognized the signs right away and referred us the pediatric rheumatology clinic at the U of M Masonic Children’s hospital. Kinlee is blessed to see a phenomenal doctor there, Dr. Mahmud. Her diagnosis was confirmed with an examination, MRI, and labs.
Over the past eight months, Kinlee has gotten incredible at taking her daily medications (which don‘t taste good), weekly injections, and cooperating with her sun protection. We are still working on helping her cope with the monthly IVIG, which is a full day of IV immunoglobulin from healthy blood donors. Some days are better than others. It was extremely difficult seeing her little body and personality change while on high dose steriods. She has always been a strong-willed and intelligent little girl, but the steriod made her irritable and many days challenging. Fortunately, we are in the process of weaning off of the steriod, and love seeing her more like herself again!
We have been cautious about sharing her story until now. We want to respect her medical privacy during this challenging time for her. However, this is an under researched disease that currently has no cure. We are honored to help spread awareness during our journey toward remission for Kinlee.
Kinlee loves playing with her younger brother, doing crafts, dancing, cooking/baking, going to the park, and spending time with family.
Your spirit is one in a million sweet girl! You make us so happy and proud!
Thank you to Kinlee’s doctors, nurses, and child life specialists, especially Dr. Mahmud, Dr. Riskalla, Dr. Shah, Ann, and the infusion center nurses. Your care and expertise mean the world to us.
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.
Registration begins at 9:00AM
Walk festivites begin at 10:00AM and go until 12 Noon
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.
Please contact Joleen for more info...