PORTLAND – The family of Elisa DiBiase spoke with pride on Thursday at how a young girl with so many physical disabilities could touch so many lives in such a short time.
Elisa DiBiase wasn’t expected to live past six months.
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She was born with Holoprosencephaly, a rare gene mutation that causes the frontal lobe of the brain to develop into two hemispheres.
As a result, Elisa had multiple physical and cognitive disabilities, but she defied the odds.
“She was a fighter,” said her mother, Melissa DiBiase of Portland. “She fought so hard. She has been through hell and back over and over again. At her worst, she still found something to smile about.”
Elisa, a fifth-grader at Riverton Elementary School in Portland, who loved going for walks and taking camping trips with her family, died on Sunday. She was 11.
Elisa was described by her mother on Thursday as a happy kid, who enjoyed playing with her baby dolls and watching her favorite televisions shows: Sesame Street, Dora the Explorer and Blue’s Clues.
Elisa couldn’t talk or play with most toys because she lacked coordination. Her mother said Elisa communicated by crying and she learned what her daughter needed by the sound of her cry.
DiBiase said her daughter lit up when she played with her dolls.
“When you put a baby in her lap, she would kiss it and smile from ear to ear,” her mother said. “She would smile with that twinkle in her eye and (let out) a big belly laugh. It melted my heart. It showed me how precious life is and how it’s the simple things in life that count the most.”
In addition to her mother, Elisa is survived by her father Michael DiBiase and her 5-year-old sister, Gianna.
At Riverton Elementary School Elisa took life skills classes. Her mother said she thrived in school and enjoyed her music and art.
“It was an amazing thing to watch her at school,” her mother said. “You could see her full potential. She loved it there. It was so her. She accomplished so much, (more than) the doctors ever thought she would.”
Elisa enjoyed being with her family and watching her sister and other kids play. She enjoyed being read to. Her mother said she loved going for walks in her wheelchair.
“It was almost like medicine for her,” she said.
“Elisa was a social butterfly. She loved being with us. You could do something so silly, and she would just smile and laugh hysterically. She smiled with her eyes.”
Elisa had every reason not to.
Since December, she has been in and out of the hospital struggling with bouts of pneumonia and chronic respiratory failure.
She was recently admitted to the Barbara Bush Children’s Hospital at Maine Medical Center in Portland. She was surrounded by her immediate family at the time of her death on Sunday.
“I have this big void,” her mother said. “I’m empty. Not only was she my daughter, but a huge part of my life. I don’t know what to do with myself. I’m lost and extremely scared. I’m afraid that I’ll lose everything she taught me. I want to pay it forward and do right by her.”
Staff Writer Melanie Creamer can be contacted at 791-6361 or at:
mcreamer@pressherald.com
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