Meet Samora, the Six-Year-Old with Spina Bifida Who’s Learning to Walk
At age 6, Samora is becoming more aware. She’ll ask, “Mommy, why don’t my toes wiggle like my sisters’ toes do?”
Born with the most severe form of spina bifida, myelomeningocele, and club foot, Samora has little to no feeling from her knees down. But with the help of a walker, along with ankle-foot orthoses (AFOs), knee-ankle-foot orthoses (KAFOs) and a dynamic movement orthosis (DMO) suit, Samora is able to do something her mom, Brandi Alford, feared she would never do—walk on her own.
Managing spina bifida and promoting mobility with orthoses
The AFOs help keep her feet at the proper angle and offer support to the lower leg. The KAFOs stabilize the knee and lower limb by maintaining proper alignment and motion control. The DMO suit supports Samora’s core and encourages her to sit up straight.
To keep all her orthoses working as they should, Samora sees orthotist Ksenia Major, clinical director of Boston O&P of Richmond, who specializes in pediatric lower extremity orthotics. Samora has been a patient there for three years.
“I’ve worked closely with Samora’s physical therapist to determine the best and most appropriate devices to help Samora meet her milestones and goals,” says Kensia.
Walking for the first time was one of those milestones. It was a proud moment for Samora, whose primary mobility aid is a wheelchair. “You could just see this big grin on her face,” says Brandi. “She said, ‘Look at me mommy!’ She was not only proud of herself, but she was also proud to show me and her Pop Pop.”
Pop Pop is Samora’s grandfather, who often takes her to her Boston O&P appointments. When she returns home, she regales her mom with details of her visit—the people she met, what she did. “She just loves everyone there,” says her mom. “They are always so warm and welcoming.”
Her favorite part is picking out the new AFO and KAFO patterns and colors. Samora’s current AFOs are rainbows, but she has a pink and purple set on the way. And her KAFOs? Fire-engine red, of course.
The pattern and color selections are very much a reflection of Samora’s personality. “I always say I never knew strength until I had her,” says Brandi. “She pushes through everything, and she tries to do the best she can.”
During a recent visit, with support from her KAFOs, Samora started to learn how to walk with crutches, rather than a walker—another milestone, another big smile.
And when she asks her mom why she isn’t able to do what her younger sisters do? “I just tell her that some people have certain challenges they have to overcome. She’s still able to do certain things that her sisters can do. She just has to do it a different way.”