In 1995, Jodi O’Donnell-Ames’ husband Kevin O’Donnell, then 30, was diagnosed with Amyotrophic Lateral Sclerosis (ALS), a progressive neurodegenerative disease. Her first thought was how to share the news with their 2-year-old daughter Alina.
Over the next five-and-a-half years, his diagnosis became more aggressive, and Alina started to notice her dad wasn’t like other kids’ dads.
O’Donnell-Ames, a 49-year-old massage therapist from Titusville, New Jersey, searched for the right way to tell her daughter that her father’s sudden lack of coordination and inability to even open a sugar packet wasn’t just a temporary problem – it was terminal.