November Spotlight - Chronic Recurrent Multifocal Osteomyelitis

Meet 9 Year old Holden (AKA my little squish). Holden is a very smart, strong, sensitive and compassionate boy. Holden lives with many different conditions. A lot of his diagnoses were a gradual process of putting pieces together. Sometimes it still feels like we are working on that 1,000 piece puzzle and only get one piece at a time.

 From the time he was born Holden suffered from chronic infections. As time went on I could tell other things didn’t seem to quite add up. At the age of 2 Holden was diagnosed as speech delayed and by the age of three diagnosed with Sensory Processing Disorder. Along the way we continued to battle with infections and he began experiencing other health concerns regarding his bones. At the age of 5 a lot of things came together all at one time. In May that year he was diagnosed with a Primary Immune Deficiency Disorder called hypogammaglobulinemia. Meaning his body does not make antibodies to fight infection. He currently receives Plasma infusions every three weeks through a port a cath. By that fall things began to crash and he was diagnosed as a Type 1 diabetic. In the meantime we were still dealing with muscle weakness, bone disorders and failure to thrive issues.

By early the next spring and through a long string of several doctors Holden was also diagnosed with a rare bone disorder called Chronic Recurrent Multifocal Osteomyelitis –CRMO. Holden has gone through countless surgeries, scans, blood draws, lots of trial and error of medications, you name it. Holden also battles with generalized anxiety disorder and ADHD.

Despite Holden’s challenges he was dealt his is a very happy boy. He LOVES Lego’s, his friends, playing board games with the family, Minecraft and playing kickball. Above all Holden has learned compassion. It is amazing to watch him truly feel what others are going through and often says he wishes he could take it from them or wishes it was him. He’s my hero!