Emilia Jane is 7 years old, and she loves superheroes, bowling, Legos, laughing and dancing, baking, and collecting cute, cuddly, and tiny toys!
In June of 2018, Emilia was diagnosed with Juvenile Dermatomyositis (JDM). JDM is a rare and potentially life-threatening autoimmune and inflammatory disease of the skin and muscles, where the immune system attacks the blood vessels. The disease affects roughly 3 in one million children.
For weeks prior to her diagnosis, Emilia was complaining of being too tired to climb the stairs, or walk from the car to the front door; she had stopped running and playing with her friends; and she was unable to get up off the floor without assistance. She was also unable to pull herself up into a sitting position when lying on her back.
For a year prior to her diagnosis, Emilia started developing redness on her face and rashes on her hands. Because we weren't looking at all of these issues together, it was easy to miss that there was something wrong with our daughter's health.
Her disease is impacted by the sun, so she has to wear a hat when outdoors, apply sunscreen daily, and avoid direct exposure during peak sun hours. There is no cure for JDM, but with proper treatment and how early she was diagnosed, remission is possible.
Some days, it is so easy to forget that our little warrior has an incurable disease, while other days are more difficult to get through. Our girl is strong, and she deals with her daily meds, weekly shots, monthly IV infusions, lab visits, and doctor appointments much better than I (her mom) have ever done...or could ever do.
So far, she has taken this all in stride. She knows she is sick. She knows she has certain limitations. She even reminds us when it is time for her meds, and to not forget her hat or sunscreen!
Even though she is doing exceptionally well thanks to treatments, we worry all the time. And not just about her health. Every day, we worry that today will be the day that she asks, “Why am I sick?” And we don’t have an answer for her.
Emilia amazes us every day with her strength. We are truly blessed to have this little girl in our lives. She is our brave little superhero, and we know with faith, love, and a strong support system, we are going to get through this.
Get your cape on and join us in the fight to Cure JM!
We are participating in the 2nd annual Walk Strong Across America.
We invite you to show your support by making a gift and walking with us on or before July 4th - from the comfort of your home, in your yard, or around your neighborhood.
Cure JM families, friends and supporters are coming together to raise $750,000 for Juvenile Myositis research. Reaching this important milestone will help ensure no promising research is left on the table in 2021.
Gifts will be matched by the Leetz Family Match. Every dollar makes a difference and gifts will be put straight to work to advance research for better treatments, better care, and, ultimately, a cure.
We are so grateful for your support.