When I work with my patients, something that comes out over time is that I understand the profound stress and anxiety that can come with caring for a child who has complex medical needs.
I know this because I’ve devoted my career to working with patients who have disabilities, but also because I’ve lived it.
My younger sister, Marquelle, was born with a serious brain injury, genetic disorder and developed cerebral palsy. Marquelle faced many challenges in her life, but through all of it, her infectious smile, laugh, loving disposition, and pure joy for life resoundingly impacted every person around her.
Marquelle received treatment at Gillette, so I’ve experienced many of the things our patients and families encounter. When a mom tells me about her child’s wheelchair getting stuck in the snow, I’ve been there. When a family member expresses that they’re fearful their loved one might die, I understand.
Children who have complex medical conditions require complex care. It’s too much for any one person to manage. It requires teamwork, planning, and the coordination of countless committed individuals and specialists.I became a complex care pediatrician because I wanted to do more for our patients and families when it came to managing their care. I do more because I believe that parents should be allowed to be parents, instead of schedulers and full-time medical experts.
Marquelle passed away twelve years ago, and I think about her every day. I am a far better physician and person for knowing, loving and caring for her.
She’s the reason I do what I do, and she’s why I’m here.
All photos were taken prior to COVID-19
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