A mother's eulogy
Where do I begin to talk about Alisa and her short life…the beginning, the end, or in between? It doesn't really matter, all stages were tough for Alisa. Alisa was born at Sisters Hospital in Buffalo, NY. She was placed in the Intensive Care Nursery for the first month. She had a difficult time coming off the drugs. I would go to the hospital after work each night to rock her for awhile before heading home. She had a pretty typical childhood until first grade when she was noticed trailing walls and falling from her desk. I had noticed subtle problems, but could not find answers. Well, we began our search for answers. Finally, in 2001, after 4 years of numerous doctors, a neurologist at Children's Hospital diagnosed Alisa with Friedreich's Ataxia. My Special Education background and experience did not prepare me to be the mother of a child with an incurable condition. Alisa's challenges were many. Friedreich's Ataxia attacks many parts of the body. Alisa became less coordinated and lost the ability to walk. She developed scoliosis which could be corrected with surgery, but was not an option for Alisa due to her other complications, specifically Type 1 diabetes and hypertrophic cardiomyopathy.
Despite her numerous physical challenges, Alisa continued to smile. She loved attending the MDA telethon each year. She loved going to MDA camp. She made so many wonderful friendships with the campers and camp counselors. Alisa was able to fulfill another dream through her Make A Wish trip. She wanted to sail on the Carnival Paradise with my Captain friend, Vito.
One of Alisa's favorite companions was her canine helper, Gabriel. Gabe truly loved Alisa and was unconditionally devoted to her. He misses her very much. He was her constant friend.
Alisa began planning a fundraiser with her teacher, Debbie Binko, in the fall of 2006. The name of the fundraiser was chosen by Alisa. It is Lizzy's One Wish. That wish is for a cure for Friedreich's. She died on December 29, at age 15, before the fundraiser could be planned. Debbie and her other volunteers will continue with the fundraiser in memory of Alisa.