Amber Bosselman is your typical 22-year-old college senior. She is currently studying psychology in Idaho and planning to get her master’s degree in industrial psychology. Amber’s life is similar to other students, except she was born with a rare disease called spinal muscular atrophy (SMA).
SMA is a disease that robs people of strength by affecting the motor nerve cells in the spinal cord. “My diagnosis story is probably like a lot of other people with SMA,” Amber began. “I was 18 months and wasn’t meeting the normal benchmarks that a baby was supposed to meet. 23 years ago, most doctor didn’t know what SMA was or how to diagnose it. ‘Just take her home and love her’ doctors would say, but they tried do their best,” Amber reflected.
Amber was born and raised in Wyoming and is the youngest of four. She believes having a tight-knit family is important to navigating SMA – her family provides a strong support system for her. SMA is the number one genetic cause of death of infants under two. Despite the odds, Amber kept improving. “I have an excellent team of doctors, but it’s always a battle of defying the odds,” she sighed.
Nonetheless, SMA hasn’t stopped Amber from living her best life. Growing up, Amber was never ashamed of her disability, but she’s wasn’t very confident. “People saw the wheelchair and not me. When I got older, I saw the wheelchair as a part of me. I saw SMA as a part of me, but it’s shaped me for the better,” she said. Amber is resilient, kind, and a non-judgmental person. Once Amber made a shift in her approach and embrace her disability, she began to “live a fuller life.”
Amber considers herself lucky. “I’m pretty independent for a young adult with SMA,” Amber emphasized. SMA doesn’t prevent her from going out with friends and living independently. Amber’s positivity seems to come from her parents’ optimistic belief of “we try until we fail.” Amber loves to sing, paint with water colors, and read books. “I’m currently reading ‘How to create and extraordinary workplace’ but I also enjoy reading science fiction and historical fiction,” Amber replied.
Amber recalls going to her first Cure SMA conference last summer is sunny Florida. “It was pivotal experience for me,” Amber began. “I learned to embrace my disability more. Conference played a strong role. There’s not that many people living in Wyoming with a disability much less SMA.” Amber recalls the long-life friendships she formed at Conference especially Sandy who was in her early 50’s when they met at Conference. Amber introduced Sandy to her mom. “My mom broke into tears seeing someone so strong and healthy.
Amber is currently receiving treatment for SMA. “My legs feel stronger; there’s more muscle tone. I’m seeing positive results in a short time, yet I’m cautiously optimistic,” declared Amber. Her optimism and positivity were clear throughout our conversation. “There’s so much hope in the community,” Amber said. Sandy is an independent business woman and role model to Amber. The Cure SMA Conference provides adults and families the opportunity to meet other people living with SMA. Although SMA is a rare disease, Amber believes that “being part of the SMA community means total acceptance and friends and support in the moments that you need it most.”
Amber is excited for the future. “In five to ten years down the road, I envision myself still living independently, renting my own apartment, having been finished with my master’s degree, and placed in a job where I begin to give back to the community. I take it very seriously and I’m anxious to give back to the community.”
Do you want to connect with folks from across the country at the Annual SMA Conference at Disneyland in California this year? Register for the 2019 Annual SMA Conference held Friday, June 28 – Monday, July 1. Interested in financial assistance? Apply for a conference scholarship today!