Abigail’s story

Abigail Burke is a six year old girl with an angelic smile. When you ask her mother, Louise, what makes her daughter smile, she lists all of Abigail’s favorites – ice cream, her sisters, and interactive TV shows like Dora the Explorer. Abby cannot speak for herself but her face lights up when her two sisters, Courtney and Jessica, are in the room. She cannot run or walk with her sisters but Abby doesn’t complain; she is happy to watch them intently and smile. Louise gets teary-eyed thinking of her dreams for her middle daughter, and while they may not be the same as those for her other two children, they are equally optimistic and important. Louise’s dream is for Abby to be able to communicate with all the people in her life.

As an infant, Abby was sick and crying all the time. Her doctor told them it was colic, but Abby’s parents had a feeling something was deeply wrong. By five months old the pediatrician noticed Abby’s hands were always clenched in a fist and referred her immediately to a neurologist. An MRI indicated she was missing myelin in her brain. They painstakingly had to wait until Abby turned one year old to see if this disorder would be degenerative; thankfully it was not. After extensive testing for every genetic disease and disorder, the closest diagnosis was found to be Pediatric Neurotransmitter Disorder, a disease that cannot be cured, but can be managed with medication. Louise will always remember the moment the doctor told her and her husband that Abigail would never walk or talk and would be permanently disabled.

Despite Abby’s diagnosis, she remains a happy, involved little girl. She attends school, enjoys playing with friends, and loves her sisters and family. Her parents feel blessed with the support of great nurses, therapists, and teachers throughout the years – first through Early Intervention and then as a toddler through St Mary’s Home and Community programs. To help accommodate Abby’s special needs at home, St. Mary’s helped the family modify the entrance to their home so Abby can be transported in her assistive chair. Now Abby easily can get to and from one of her favorite places –school! Abby has been attending the Carmen Road School on Long Island since three years old and is well loved. Her mom says that throughout the years all of the people helping her daughter have been amazing, especially at school. When Abby recently had to undergo hip surgery this year, the family realized how much her daughter missed being at school. Thankfully once she was healed, she was right back on the school bus and all smiles again. Louise is happy to have support from the staff from St. Mary’s and it gives her a great sense of peace that Abby will be able to attend her favorite school at Carmen Road until she is 21 years old.