This is Tyler and Dara Bailey’s story:

Dara Bailey has never viewed her life with SMA as being different than the lives of other people. Growing up, she had plenty of goals. She went to college and obtained a master’s degree in marriage and family therapy. She went on to work with younger children in schools, listening, lifting them up, and… Read more

Jessica Keogh‘s delay in receiving an accurate diagnosis wasn’t for a lack of trying. Her parents took her to all the best specialists, but on each visit, they were told she was “so unique.”

While pursuing a diagnosis Jessica got on with her life, living it to the fullest and serving her community by using her unique skills. She’s… Read more

Maxwell McKnight is 18 and has spinal muscular atrophy (SMA) type 2.

Throughout his life, Maxwell has faced many challenges. He is fortunate to have a wonderful group of supportive friends and family. Through friendships, family, and my relationship, Maxwell has learned to just be himself and that he is enough.

“Without many of… Read more

When John and Corey Weber learned their 4-month-old daughter, Kate, had SMA type 1, some of their first thoughts were, “Why us?” “Why is our girl 1 in 10,000?”

They chose to turn our lemons into lemonade, and are grateful for science and innovation, the treatments available to them, kind humans like their doctor, and so much… Read more

Ryan Manriquez is a 22-year-old fifth-year transfer student at the University of California, Davis, double majoring in political science and communication.

In the fall of 2020, Ryan was looking to be a part of something bigger than himself, since he’d always wanted to help others. Long story short, he was elected president of the … Read more

In 1968, Steve Mikita was 12 years old and had severe scoliosis. He underwent spinal fusion. Although Steve eventually became an attorney, he learned more about advocacy from his mother than he ever learned during his 39 years as an assistant attorney general.

Steve’s mother reminded him that he was not the only patient and that he had… Read more

Jasmine West is 28 years old and lives in England. She drives her wheelchair-accessible vehicle and likes to think of herself as a confident and independent woman. She employs a team of carers who assist her with daily living, and who are all her best friends. Jasmine describes herself as a “crazy cat lady” and dreams of opening a cat café — an… Read more

Ross Hovey has not often let SMA hold him back. But there are regrets. He wishes he’d lived the proper “uni life” and moved away from home but he was too worried about a nonfamily member doing personal care.His other disappointment is not finding love yet, and he believes living with family until 30, the way he presented himself and his… Read more

Shailynn Taylor is a 26-year-old entrepreneur, university graduate, public speaker, and model, and she lives with SMA type 2.

Shailynn remembers what the lack of representation in all aspects of her life felt like as a kid. There were no TV shows, musicians, or anyone she could identify with.

Shailynn has strived to paint a different… Read more

Madison Parrotta was confident that she would find a job she was passionate about just as easily as she could sign her name.
But she was wrong. Not only did she not get hired due to blatant ableism, but her SMA was progressing. For a while, Madison gave up on what she wanted. But then the pandemic happened and she realized two things:… Read more

Amber Joi-Watkins’s daughter, Céline, was diagnosed with SMA type 1 in December 2018, when she was 6 months old.


Amber has been in touch with so many families and individuals affected by SMA virtually, and she describes this bond as… “indescribable.”

However, the power of seeing these same people in the flesh is unmatched, and… Read more

Steve Bingman believes that society often tells us that those with disabilities have a predicted path in life., yet what it doesn’t tell us is that disabilities can be used as an advantage in life. This is what Steve calls his superior motivational attitude.

One day, around age 24, he decided out of the blue to go to college. Steve… Read more

Ben Lou is a mathematician, physicist, and philosopher studying at MIT. He also has SMA type 2.

Ben is passionate about STEM (science, technology, engineering, and mathematics), and this passion has encouraged him to chase every single one of his aspirations.

“There is a great underrepresentation of disabled people in STEM, which is a… Read more

Kristen Resendez is the mother to her son Jack. He is 7 years old, and they live in South Texas.

At the SMA Conference this year, the president walked up to Kristen and said that everything she puts on social media helps many families and is important. Kristen wants to encourage parents to pull themselves out of grief a little faster so… Read more

George Wang believes that in today’s world, there’s something out there for people with any level of ability. Realizing that he would struggle with a physically demanding career, provided him with the motivation to knuckle up on academics, and learn about the laws of the universe, new treatments for neurodegenerative conditions like SMA, and… Read more

Janelle Fiesta grew up watching Disney movies and was captivated by the characters and stories that Walt Disney created. She too wanted to create art that could reach and inspire others.

Despite living with SMA type 2, Janelle’s hands and arms were strong enough to move and scribble lines onto paper. She studied the basics of digital… Read more

Tonje Larsen is 23 years old, was born with SMA type 2, and lives in Norway. Tonje is also a mom.

Once Tonje makes up her mind, she does things without looking back. She’s the first with 19% lung capacity with SMA in Norway to get pregnant. The doctors were shocked, but she wanted to have a child early because she doesn’t really know… Read more

Jose Flores is a 45-year-old from Florida, a global motivator, consultant, and No. 1 bestselling author on Amazon. He’s been breaking barriers since the day he was born. Doctors didn’t expect Jose to live beyond his teenage years. He’s still here.

As Jose began to lose his ability to do certain things, one thing he never lost was hope.

He… Read more

Chessa Birrell is 26 years old and lives with SMA type 2.

While away at college, she lived on campus and had groups of aides that ranged in size from eight to 15 girls. Chessa had had aides all her life, but managing 24-hour care proved to be a challenge. Chessa learned that it would be up to her to explain to the aides about the… Read more

Megan DeJarnett remembers being around 10 years old when she heard the doctor tell her parents that the average life expectancy of someone living with SMA type 2 was around 15 years. Yet Megan was raised that no matter what life threw at her, she could take on the challenges.

At age 23, Megan and her high school sweetheart… Read more