CRMO Awareness Virtual 5K Walk-A-Thon - Team Seanster

Sean is a beautiful soul who has had to put up with more medical procedures and diagnoses in his short 14 years than anyone should have to. Yet, he takes each hospital stay, surgery, needle poke, and doctor’s visit in stride. Because he hasn’t had the opportunity to know any different.

Sean was born with an ultra-rare triplication defect on his first chromosome – as far as we know he’s literally the only one in the world with this triplication. At four years old, he was diagnosed with this condition and many underlying comorbidities including an atrial septal defect, deformed ear drums (hard of hearing), chronic ear and sinus infections, and global developmental delays. At the time, his health was so fragile we were told to expect the worst.

Once doctors were able to address many of his comorbidities, Sean’s health stabilized for a few years, but the fact that his condition is so rare means that we never know what’s coming next. He is still hearing impaired, hearing with the help of listening devices, his heart is still monitored regularly, his developmental delays continue, and he remains incontinent, to this day.

At the age of 10 his medical “stability” evaporated overnight when he was diagnosed with another one-in-a-million diagnosis, Chronic Recurrent Multifocal Osteomyelitis (CRMO). That was an incredibly scary time, as the first diagnosis of the legions CRMO leaves on your bones was cancer. And while CRMO isn’t quite the shock cancer is when you hear it, its incurable nature, and the chronic pain it leaves my son in are absolutely horrifying. Since the summer of 2017, Sean has had to undergo monthly infusions of biologics in order to keep his flairs with CRMO in check. Most of the time Sean is still in so much pain he finds it hard to walk from his bedroom to the living room or bathroom. And just last year came the diagnosis of PG, which the doctors suspect is a comorbidity of CRMO.

Yet, Sean’s still a happy and loving 13-year-old kid; he loves video games (Minecraft), cooking, sharks, music (his favorite band is Imagine Dragons), reading (current favorites include Magic Tree House and Gravity Falls), and playing with his friends when he feels up to it! We’re a lucky family. We love each other and have thankfully had access to the doctors and medical care that can give Sean his best quality of life.

Connect with others about this event and see who's going!

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Team Seanster Members

• Sondra Bidwell - Donation To Kaila's Komfort

Team Seanster has raised $5.00.