Mary Kate Marlow was born March 31, 1994 to her proud parents, Tom and Eileen. She was a very happy, healthy baby; always with a sparkle in her bright blue eyes and a smile to light up her rosy cheeks.
At about 9 months, her developmental progress slowed and we became concerned. By 15 months the pediatrician shared our concern and so our journey through the medical maze began.
At 2 1/2 years Mary Kate was diagnosed with INAD (Infantile Neuro-axonal Dystrophy), a rare progressive disease that would eventually deny her any voluntary movement and trap her mind and spirit in a beautiful shell.
Our family entered a new dimension, if you will. Until you travel the path of a physically disabled person, you cannot imagine the barriers. Even as a nurse with some knowledge of similar disease processes, I never considered the every day life of a disabled person that is, until it became our life.
As Mary Kate grew we needed to purchase a variety of seating modalities to facilitate her positioning. When she became too big for her stroller she needed a wheelchair which we got when she was 3 1⁄2 years. So what next?
Of course we needed to purchase a van with a wheelchair lift. We had to make accomodations to our home to facilitate a wheelchair, i.e. widen doorways and add ramps. We purchased a special tricycle, shower bed, hot tub, swing and eventually even installed a motorized lift to help Mary Kate in and out of bed to her wheelchair and shower. The list of out of pocket expenses goes on. All of these items are cost exorbitant and none are covered by insurance as they are deemed not “medically necessary”. Tom and I have been blessed by the generosity of family and friends who raised money to assist us with some of these expenses. We would like to continue in that same spirit of generosity and love by forming “Mary Kate’s Legacy” a foundation for giving.
We would like to help other families with special needs children free themselves of some of those barriers and improve their quality of life. Our van lift enabled Mary Kate to visit family and friends, go to church or to the mall, go to a park or museum and even on family vacations. These are things we all take for granted.
Mary Kate had an amazing spirit and despite her weak shell she had a great impact on all those who met her. We hope that her spirit will live on through this foundation, but we need your help.
We were blessed to have had Mary Kate in our lives, if only for 11 years. She taught us a great deal about faith, hope, courage, and especially love. To love unconditionally is to see beyond our limitations and help us achieve our true potential. Inspired by her love, we hope to help others reach this goal.