Lillie-Maude’s Journey

The story of Lillie-Maude

Lillie-Maude is a 10 year old girl from the UK, she was was diagnosed with Chronic recurrent multifocal osteomyelitis which is a one in a million rare disease back in April 2017. 

She currently has two lesions, one in each of her femur’ s. Back in January 2017 Lillie collapsed during a competative dance competition and had been complaining of Knee pain that had gradually got worse over a few months, she was refered to the local hospital for an X-ray which came back clear, however as she was waking up throughout the night in lots of pain the doctors ordered an MRI. 

This scan showed a 7cm lesion deep in the bone of her right Femur, a few weeks later Lillie had a biopsy to determine if the lesion was cancerous. 

The results came back negative but showed signs of inflammation, Lillie was treated with anti biotics and Nsaids for the pain. 

A few months later and after a second full body MRI, the doctors found a second lesion and diagnosed CRMO. 

Lillie has good and bad days with the pain, sometimes she uses crutches to help her get around. She also experiences dizzy spells and headaches. As CRMO is so rare we are still learning about the disease and take each day as it comes, Lillie is such a tough little girl and always puts on such a brave face, she still dances and won’t let her illness get in her way. 

I am SO proud to call her my Daughter, we hope to spread awareness of CRMO and would love to hear about other people stories! 

 

Find others with chronic recurrent multifocal osteomyelitis on RareConnect, the online platform for people affected by rare diseases.