faith personal story

Faith's Story

Faith was a healthy little 4 yr old girl, until one morning, with no warning or cause, she woke up with two collapsed vertebrae. After visiting with many doctors, having multiple bone biopsies and curettages and countless MRIs and scans, she was misdiagnosed and mistreated for 3 years. It wasn’t until a final surgery when she was 7, that she was diagnosed with CRMO. She has had many lesions in her vertebra, sacrum, femurs, tibias, fibulas, and ankles. At 13, she is still searching for something that will take the inflammation and pain away and even though she hasn’t found it yet, she is hopeful. She has become a strong voice for the CRMO Community and has partnered with many different organizations and agencies to educate and inform others about this rare disease. She believes that all those who suffer from this disease are warriors and are #crmostrong.

"Mommy will you carry me?

- Sadie, age 9

Jaron's Story

When Jaron started to walk we knew something was not quite right. He would walk with a limp and could not move like other kids his age. The limp and limited mobility continued as he got older but Drs did not know what the cause was. The Drs would tell me that "Some kids just move differently... I think he is moving just fine.....I do not see anything wrong with him..."  As time progressed he started to scoot on his bottom to go up and down the stairs because it was too difficult to walk.  He had difficulty getting dressed because his legs were so stiff he could not bend them.  After 8 years of taking him to Drs we finally got the diagnosis of CRMO.  It has only been a year since the diagnosis and we are still struggling to treat this disease. We need more research and treatment options for these kids.

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"Mom I don't want to be in pain anymore"

- Deja

max

Max's Story

This is Max. He is 9 years old and was diagnosed with CRMO when he was 8 after 8 months of misdiagnosis. Initially Max experienced off the charts pain in his right knee which lasted about 4 -6 months often times waking in the night inconsolable. He was originally treated by his local pediatrician for Lyme's disease (no known bite) and later with a plan for a year of antibiotics for recurrent strep (never had a positive strep test). Finally, I went with my gut that it was something else and with the help of a new pediatrician was referred to the University of Iowa Hospitals and was lucky enough to have an appointment with Dr. Polly Ferguson. Finally a diagnosis that we could work with! Max had four lesions of which only one was causing pain and we started treatment with daily NSAIDs. Other than the onset Max has had a mild case of CRMO and daily Meloxicam controls most of his inflammation and pain. Every few months he will have a flare that blows right through the medicine but only lasts about a week which is manageable. We are cautious to move to the next tier of medications, but will tackle that obstacle if the need arises.
In addition to CRMO, Max began experiencing stomach issues (pain, loss of appetite with weight loss) after his diagnosis necessitating upper and lower scopes for which nothing was found. He also has chronic lymphadenectomy(16 mos of swollen nodes). Due to poor weight gain, night sweats and some persistent viral infections he had lymph node and bone marrow biopsies to rule out malignancy. Luckily both of those tests were negative. I believe his swollen nodes, stomach issues,seemingly suppressed immune system, poor weight gain and weight loss are connected to his CRMO and I would like to see (and perhaps this is already happening) research look at a systemic approach to the disease as I think it affects more than our children's bones. Max has been lucky thus far with CRMO, but we have been through the gamut worrying about underlying health issues, and he continues to have swollen nodes, night sweats and consistent viral activity.