Meet our little Superhero!
Emilia Jane is 5 years old, and she loves superheroes, unicorns, 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 okay, and she hasn't once complained, even when she was hospitalized twice in the same week, 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.
So, get your cape on, and Join Emilia’s Legion as we battle to find a cure for JM!
Join us at the Inaugural Annual Philadelphia Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk!
The walk begins and ends on the ground floor of 100 South Independence Blvd. W, Philadelphia, PA 19106 (adjacent to the Independence Beer Garden). There is a parking garage in the same building, and they have provided our Chapter with $10 off coupons that will be handed out at the event. The coupon will reduce the parking cost to $18. The entrance to the garage is on Ranstead, between 6th and 7th. There is street parking in the area, but I believe it is limited.
Registration opens 4:00 PM (on-site registration available).
Walk Festivities begin 5:00 PM.
This event is free and open to the public.
Contact firstname.lastname@example.org for more information.
All proceeds benefit Cure JM Foundation, a 501(c)(3) nonprofit organization with the mission to find a cure and better treatments for Juvenile Myositis and improve the lives of families affected by JM.
Through this walk Cure JM families, friends, and supporters are coming together to raise $20,000 for much-needed Juvenile Myositis research, including research Cure JM is funding right here at Children's Hospital of Philadelphia's Center for Applied Genomics.
Juvenile Myositis (JM) is a life-threatening disease which causes the body’s own immune system to attack healthy cells and tissues.
Juvenile Myositis can affect virtually any system of the body, the heart, lungs, skin, muscles, and more. There are currently no FDA-approved treatments and no cure….YET!
But that’s where you come in! Thanks to friends and family like you, Cure JM has made extraordinary progress in drug-development and genetic discovery. But, the reality is that we simply must move faster and in more areas of research than ever before and we need your support.
Every donation goes straight to Cure JM, and together Cure JM friends and families have raised over $12 million for JM research.
Can we count on you to help today?