Ainsley Higgins loved things most kids love, watching television, being with her friends and listening to music. She communicated love to everyone around her, even though a rare disease kept her from speaking and limited her movement.
Ainsley was born on June 13, 2005 at Northside Hospital in Atlanta. According to her mother, Lisa Higgins, Ainsley started having seizures at about a month old. After multiple hospital stays and different medical treatments, she was diagnosed with mitochondrial disease in November 2006. The illness can cause neurological problems, developmental delays, increased risk of infection and gastrointestinal disorders.
“When you work with a child with a serious illness, it’s about finding life despite the disease and not letting the disease dictate life,” said Dr. Jeffrey Klick, director of Palliative Care at Children's Health Care of Atlanta and a member of Ainsley's medical team since 2011.
Lisa Parr, Ainsley’s primary nurse at Scottish Rite since 2008, talked about her tenacity.
“There would be times when she was in pain, but she was smiling much more than she seemed to be sad," Ms. Parr said. "Her family always kept a positive attitude."
Despite her limitations, positivity surrounded Ainsley. From the friends who loved to draw pictures of her, to her love for her favorite song, “Great Day,” a tune from the Nick Jr. television program Fresh Beat Band, she glowed with excitement.
In January, Ainsley was able to attend a special needs preschool at Mason Elementary School in Duluth.
“Technically, she was in the first grade," Mrs. Higgins said. "A teacher would come to the house twice a week and when she was better, she was able to attend school for about an hour with her nurse. Her favorite part was the socialization. It was hard to have her around other kids because she got sick so easily, but she loved it."
Ainsley Paige Severtis Higgins of Duluth died Wednesday after complications from a minor surgery. She was 6. Funeral services will be held at 10:30 a.m. Saturday at All Saints Catholic Church. Crowell Brothers Peachtree Chapel Funeral Home is in charge of arrangements. The body will be cremated.
“People don’t understand the sheer number of people involved in the care of fragile children," said Dr. Larry Saripkin, a pediatric gastroenterologist who had been treating Ainsley for about four years. "From the pharmacist to the home health care team, it took so many people to take care of Ainsley, and it makes me feel good when medicine is practiced so well."
Dr. Saripkin also praised the way the Higgins family worked with the medical team and cared for their daughter. He said Mrs. Higgins is "an incredible mother and a strong patient advocate who made things happen."
“There are tons of parents who have to struggle on their own," Mrs. Higgins said. "There are big things that happen everyday, but kids with rare diseases are real and they need help."
This prompted Ainsley's parents to form the Ainsley Paige Higgins Dare to Hope Foundation, which works to raise awareness and better the lives of children with rare, critical, chronic and complex medical conditions.
In addition to her mother, Ainsley is survived by her father Matthew Higgins of Duluth; grandparents Anita and Ronald Severtis of North Canton, Ohio; Terry and Sharon Simon of Massillon, Ohio; and Terry and Barb Higgins of Elyria, Ohio.
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