T E S T I M O N I A L S

The Story of Alex

Alexander Skojec was born on January 22, 1999, a day that started out to be full of joy for Alex’s parents and older sister in anticipation of a new son and brother. However, Alex’s parents noticed immediately that their beautiful baby boy was different. His facial features were coarse and his abdomen was unusually enlarged. The doctors whisked him away to the nursery to attempt to diagnose Alex’s condition. This was just the beginning of the family’s visits with multiple specialists as they struggled to identify what was causing his condition and why Alex failed to reach typical developmental milestones. His sweet baby babble didn’t develop into speech and he was unable to sit up on his own, stand or walk.

On Alex’s first birthday, the geneticist came to Alex’s home to deliver his discovery. Alex had Sialidosis Type II, an extremely rare genetic metabolic disorder characterized by enlarged internal organs, a compromised immune system, skeletal abnormalities and breathing difficulties. “The physicians tell us this disorder will likely end his life in childhood, before he experiences many of the joys of boyhood. It will not do so gently, but will instead be cruel in taking things away from him before he dies,” said Alex’s father, Bill.

Alex had every reason to be an unhappy little boy. He couldn’t walk, talk, or play with other children his age. But for the next six years, Alex lived his life to the fullest extent possible despite his physical problems and discomforts. He could brighten a room with his engaging smile, infectious laugh, and flirtatious manner. Alex was blessed with a loving and devoted family and professional support team. His favorite person was his sister, Abby, who he loved to tease by pulling her hair. Alex adored his caregiver, Angela, from Abilities First’s At-Home Res Hab program. Truly an angel, Angela took him everywhere, so that he could live as ‘normal’ a life as possible. Angela met with Alex’s therapists, teachers and hospice staff. Alex became a favorite customer at the local restaurant in his town and Abilities First’s administrative offices where Angela would take him for social outings.

In April 2005, Alex was given the honor of Abilities First “Participant of the Year.” His family, Angela, community members, staff and supporters joined together to honor Alex at the organization’s Annual Gala. During the festivities, Alex flashed his mischievous smile and charmed the audience. Six months later, on October 24, 2005, Alex passed away at the age of 6 years, 9 months and 2 days. But his spirit lives on. Alex’s father has made a personal commitment to turn his hobby of “photographing everything beautiful for Alex to see” into a means of supporting the improvement of the lives of children with rare disorders. Alex’s mother has been a guest lecturer for students studying genetic disorders and keeps the line of communication open to other parents of terminally ill children to support them on their journey. The Abilities First community will not soon forget Alex, “the little boy with the engaging - and sometimes mischievous - smile.”