Madison (now 6.5 yrs old) was diagnosed with Juvenile Idiopathic Arthritis in 2014 at 3 years old. While that disease by itself entails a life-long, painful battle and has NO cure, she has since been diagnosed with several other autoimmune diseases including thyroid disease (both Hashimoto’s and Graves’), autoimmune hepatitis and IgA deficiency. In November 2016, after struggling with severe back pain and unable to walk, she was also diagnosed with Chronic Recurrent Multifocal Osteomyelitis (CRMO) - a very rare autoinflammatory bone disease. CRMO causes very painful lesions (tumors) in the bones. These lesions in Madison’s spine caused several vertebrae to collapse and resulted in a kyphosis (bending) into her spinal cord. She also has active lesions in her pelvis, ribs, and ankle. Today she wears a body brace and will ultimately require reconstructive spinal surgery. Madison has a very complex autoimmune history and continues to be quite a rare and unique case in the medical community. There are NO cures for any of her diseases...and efficacy of current treatments can change.
She is doing well today - with the help of several medications that suppress her already compromised immune system. She is highly susceptible to viruses and illnesses, but we do our best to keep her “healthy” (and avoid living in a bubble). She sees more specialists routinely than most people will see in a lifetime. She is an amazing, loving and resilient...and we call her our little “ninja warrior princess.”
Kids Get Arthritis Too:
We hope you can come and support Madison at this event.
Next Event: January 27, 2018