Voices of the Spina Bifida Community: Allison’s Story

She is a 38-year-old from Averill Park, New York.

After a lifetime of living with Spina Bifida, undergoing numerous surgeries, and managing chronic pain, Allison faced one of her major setbacks in April 2024. She became seriously ill and lost her ability to walk or wear her braces, placing her in one of the hardest periods of her life. The early days were filled with fear and a negative mindset, and she didn’t believe that she would get through it. However, with the support of her mother, friends, therapists, physical therapists and SBANYS staff members, she slowly began to rebuild both her strength and her mindset. What carried her forward was support, especially from her mother, who told her, “You have to get through this. You’re going to get through this. Push on.”

One of the first signs that things might improve came when she was fitted for new braces. From there, recovery was slow and often frustrating, but she kept telling herself, “I’ll get there,” even on days when progress didn’t feel visible. Each small accomplishment and milestone mattered. Learning to walk again wasn’t easy, but with patience and constant encouragement, Allison began to feel good in her own body again.

This experience changed how Allison sees herself. Although she had been told her whole life that she was strong, she never truly believed it until she went through this journey. Throughout it all, she leaned on her faith, reminding herself that better days would come. Losing independence, including having to rely on others for transportation, became one of her hardest challenges, but it also deepened her resilience.

Today, Allison is focused on getting healthier, stronger, and caring for her mental health. Her message is simple but powerful: be patient with yourself, find something important to you to concentrate on, & lean on the people who care about you. As she reminds us, “Even when you’re going through a storm, better days will come.”