Meet Pamela

Pamela Mastcko- Advocate and SMA Warrior.

Diagnosed with Spinal Muscular Atrophy at the age of six, Pamela has lived a life defined not by limitations, but by resilience and determination. From her earliest years,subtle differences in her mobility- difficulty with stairs, running, an unsteady gait- led to years of inconclusive doctor visits. It wasn’t until a cousin received the same diagnosis that the similarities in their movements promoted deeper investigation, eventually confirmed by a muscle biopsy.

Growing up, Pamela led an active life that defied expectations. She danced for ten years, earned her red belt in karate, and cheered competitively with her high school. To many, she seemed like any other child- something she worked hard to maintain, often masking her condition out of a sense of embarrassment. But even in silence, she was building strength.

Pamela received early treatment at The Ohio State University, where her familyparticipated in genetic testing due to the rare presentation of SMA in cousins. Years later, she and her cousin became some of the first patients dosed with Spinraza, a groundbreaking treatment for SMA- an experience she views as both historic and hopeful.

After a series of injuries in her 30s- including a broken foot and later significant knee trauma- Pamela experienced accelerated atrophy and reduced mobility. Today she remains semi ambulatory at home and uses a power chair for safety and distance in public. She continues her lifelong care with Ohio State and remains passionately involved in the SMA community.

An outspoken advocate for people with disabilities, Pamela challenges themisconception that physical disability equates to intellectual limitation. Through her workin education, her career and her personal storytelling, she strives to amplify the voices of adults living with SMA- an often-overlooked demographic in research and support efforts.

While she acknowledges the challenges of living with a progressive condition, Pamelacontinues to dream of a life without limits- and works each day to build a more inclusive, understanding world.

If you’d like to connect with Pamela you can find her on IG: @pamelamastcko or FB:Pamela Norfolk Mastcko

Meet Lisa

Lisa was born healthy and met all her milestones (sitting, standing and walking) on time, but as a toddler, she fell more frequently than her older sister and tired easily when walking. She had difficulty climbing stairs and wanted to be carried. Her parents thought that she would get stronger with nutritious food and exercise. As she got older, she noticed that even her younger sister could run and do the things she found difficult with ease.

Doctors told her parents that they couldn’t find anything wrong with her, so her parents hoped she would grow out of it. As the years passed, her difficulties continued. It was a time before the internet. Support groups, SMA organizations and googling did not exist. Lisa tried to hide her physical difficulties and ignore her struggles, but she never stopped wondering why she was different from her sisters and peers. Eventually at the age of twenty, her grandmother intervened and brought her to a hospital to find out what was causing her muscle weakness. There she underwent EMG testing and a muscle biopsy and was ultimately diagnosed with SMA type 3.

Soon after her diagnosis she married and had two healthy sons. Her marriage ended in divorce, propelling her into the role of single mom. Raising two boys while battling against the effects of SMA made life more difficult, but she was up for the challenge. To provide her children with a better life, she returned to college to earn her bachelor’s degree in speech and language pathology and a master’s in education of the deaf and hard-of-hearing.

She was then able to fulfill her dream of working with children. Being a school-based speech therapist allowed her to help children with various disabilities improve their communication skills. Unfortunately, she was forced to retire after fourteen years of service due a severe knee injury leaving her using a cane and eventually using a scooter outdoors.

As SMA progressed, Lisa suffered three serious fractures that required hospitalization, surgeries and weeks of rehabilitation. Each time she wondered if she would lose her ability to walk. She believes that being on the first approved treatment for SMA (Spinraza) helps her fight against the progression of SMA. Although using a walker became her new level of “normal,” she is grateful to be somewhat ambulatory. With every fall and every setback, she pushed forward. Her resilience never waned. She sees herself as a warrier that is fighting a war against SMA, and she is winning. She wins every time she rises from a fall or finds new ways to get around the weakening of her muscles.

She is grateful to have met her soulmate, Jorge. They will be celebrating their 25^th anniversary on September 3^rd. He has been with her through the darkest of moments, providing love and support when she was filled with despair.  She has learned that life can be rewarding no matter what level of mobility she has. SMA has taught her to be Strong Minded Always.

After fulfilling her dream of publishing a collection of children’s books, she then began writing articles about her experiences with SMA. She is an ambassador for the mySMAteam health network where she offers support to members living with SMA. Her memoir (Falling; A Journey of Strength, Survival and Rising by L. A. Batista) was recently publish and is available on Amazon, B&N, BAM and Bookshop.org. Her website is: Falling.labatista.com