Georgie used to get sick about every month as an infant, then every two weeks, weekly, and now he remains in a cytokine storm we can’t seem to break. HA20 means the off switch for inflammation is essentially broken, so any trigger can set off a flare, and flares don’t go away anymore. He is sweet and funny and manages to smile every day despite being sick more days than not for his entire 20 month life. He has battled a right coronary artery aneurysm, recurrent severe anemia, rashes, fevers, headaches, leg pain, unstable gait, significant chronic GI pain, recurrent oral and GI ulcers, chronic nausea, days he won’t walk, weeks he won’t eat solid food, 4 syringes daily of medicine that doesn’t fix him, only keeps Jim out of the hospital..and yet he wakes up every day jabbering and smiling, snuggling the day away until his current dose of meds begins to wear off again and the fatigue and fever begin to set in. He struggles every single day, but still finds a way to smile.
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