Julian's Story
Right now, in our community, there are thousands of kids like Julian waiting for care. Your support of CHKD's Lighting the Way campaign will help bring children the mental health services they need and deserve.
This is Julian's Story
All Julian wants is to have a life that's not filled with pain.
At 18 months, doctors at CHKD diagnosed Julian with glycogen storage disease, a rare genetic disorder that impairs the function of his liver and muscles. He endures constant muscle pain and fatigue. When he gets tired, he uses a wheelchair.
Every day, it's a race against the clock to keep his blood sugar within a safe range. At age 6, he needed a gastrostomy tube to help with his constant feedings. For a kid who already felt so different than all his friends, the procedure brought on anxiety and depression.
His parents turned to CHKD for help. Here, he's learned coping mechanisms for what he describes as his "really bad days." Going for a walk, taking a bath, and listening to music are some of his strategies. Now 10, Julian also takes medication to lower his anxiety level.
"It's so hard to live with a disability and anxiety, but you need to know that life is so beautiful," Julian wrote in a recent essay about his mental health struggles. "There are so many amazing doctors, people, and therapists who have my back at CHKD. I'm not going to give up!"
Children like Julian, who need care for medical as well as mental health challenges, have an even harder time than most finding suitable beds when they need inpatient psychiatric care. Few facilities are qualified to care for such complex patients. That's why children with dual medical and psychological diagnoses will be one area of particular focus for CHKD.
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