In February 2019, our daughter Ava was taken to the ER after suffering a seizure in her bed during the middle of the night. She had just come home from the hospital that very day where she had been admitted two days prior due to abnormal blood cell counts, a mysterious rash on her hand, and several weeks of extreme lethargy, weakness, and cold-like symptoms. After being readmitted, she lay in the PICU, unconscious and intubated, for several days.

Ava was experiencing brain inflammation, and although she was seen by just about every specialist you can think of, the doctors could not determine the exact cause of her symptoms. It wasn't until an experienced pediatric rheumatologist examined her that we learned she was suffering from a rare, autoimmune disease known as Juvenile Dermatomyositis, or JDM for short.

JDM attacks the skin and muscle tissue primarily, but it can also attack other organs including the heart, lungs, digestive tract, and in even rarer cases, the central nervous system, which was the case with Ava.  While research has advanced treatments for the disease, there is still no cure.

Ava has made tremendous progress in the past year, but she continues to receive monthly infusions of IVIG, and we continue to hope for a cure. This is where you can help!

We are participating in Walk Strong Across America and 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.