Cecily was a healthy little 5yr old girl, until one morning, with no warning or cause; she woke up with a very enlarged and painful left Clavicle. After visiting with many doctors, having multiple bone biopsies and labs, countless MRIs and scans, she was diagnosed with CRMO (Chronic Recurrent Multifocal Osteomyelitis). CRMO is a painful autoinflammatory bone disease. There is no infection. Instead, the immune system wrongly attacks normal bone. This diagnosis is rare and affects every 1 in a million persons. After almost 2 years of medical treatment we are still struggling to treat this disease.

 

 

She has recently started Humira injections administered every other week in hopes of reducing inflammation, preventing bone damage and bone deformities, to help avoid growth problems and to decrease pain. The injection itself is painful upon administration; it suppresses her immune system and makes her feel very sick afterwards.

 

Having CRMO is very stressful and will require close monitoring from her pediatric Rheumatologist as well as frequent doctors’ visits as she undergoes treatment at the Children’s Hospital of Philadelphia.

 

Our hope is to find healing for our daughter, to bring awareness to the community about CRMO and to promote research and support to families affected by this disease.