Bella the Brave Fights Phelan McDermid Syndrome
June 29, 2013
Bella is three years old. Bella loves music and finger plays. Bella loves to swing high and be tipped over while singing “I’m a little teapot.”
Bella adores her sisters and her Daddy. Bella’s wheelchair is pink and she loves eye contact. Bella’s smile is rare and spectacular. Bella is beautiful and brave.
Bella is diagnosed with Phelan McDermid Syndrome, Cortical Visual Impairment, and Polymicrogyria. All of these diagnosis equal many appointments. Her calendar is more full than most adult’s. She charms doctors, nurses, and therapists (along with an occasional horse) everywhere she goes. She rarely complains and she always works hard.
At six hours old she began the battle of coordinating breathing with eating and sleeping, which she achieved around 8 months (assisted by a daily nebulizer treatment). At four months old she began the battle of tracking in an effort to see her world, which she is conquering daily (watching every move her sisters make and zoning in on Signing Time, her favorite show.) Around the same time she began to fight with her muscles, pushing and straining with the help of many therapists, family members, a lot of bulky equipment, and a sweet pony named Sugar. She has recently begun to tackle communication. Not surprisingly she has conquered the ability to shake her head “no” and has begun to understand some choices on her iPad.
None of this has been easy. Sometimes it breaks my heart to put her in the car for another therapy appointment or put on her braces to squeeze in therapy at home but I see her progressing. I see her finding her voice and her feet and I know that we are doing what she needs. Throughout these battles she has remains so sweet and loving. She is my brave, beautiful inspiration and I feel so blessed to share her victories.
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