TAMPA — Maria Alexandra Betancur donned a sparkling tiara on Saturday. There were champagne toasts, lots of food, presents, a tiered white cake and music.
Maria's parents, aunts, uncle, cousins and caregivers all gathered in an apartment complex clubhouse to celebrate her quinceanera — a rite of passage for Hispanic girls presented to society in celebration of their 15th birthday.
Maria turned 15 on Thursday. But "cognitively, she's maybe 2 or 3 years old," said her primary care nurse Lori Jensen. "Functionally, she's an infant."
Diagnosed with cerebral palsy at 9 months old and suffering from severe scoliosis, Maria may not live to see her sweet 16. LifePath Hospice gives her 24-hour-a-day care.
The family moved to the United States from Colombia three years ago in hopes of finding better care for Maria here.
"She doesn't have a 'quality of life,' " said Jensen. "But the family is so supportive of this young lady, it's amazing."
The room was decorated with purple roses and daisies and baby's breath. Maria wore a white dress with tiny purple flower appliques that matched the ones decorating her wheelchair and silky little footies.
Her father, Wilson Betancur, brushed her dark brown hair from over her ear, gently rubbed her arm and kissed her cheek.
Guests kissed her, too.
Maria did not respond.
Due to the cerebral palsy, which affects muscle control, Maria is incapable of physically showing emotion, save for a slight grin.
Nonetheless, Wilson Betancur calls his only child a miracle. "This is so important to us because she has lived so long," he said.
Multiple seizures, breathing complications and other physical issues have nearly killed Maria many times, said her mother, Alba Kopcinski, who has been planning Maria's quinceanera since before she was born.
"When I had her here in my belly, I said, 'I'm going to celebrate!' " said Kopcinski.
And as Maria sat Saturday in her wheelchair, her mother danced for her.
Amber Mobley can be reached at firstname.lastname@example.org or (813) 269-5311.