Blaine Flemming likes Legos, SpongeBob SquarePants, reading, playing with friends and math -- not necessarily in that order.
The 8-year-old Minot boy likes his older sibling, too, even though the two sometimes “fight like brothers,” says Amanda Fowler, their mother.
When the boys attended the same school, Auston, who turns 12 on Feb. 11, would stick up for Blaine when others picked on the younger boy. But Blaine, who has a disability, is pretty good at fending for himself, Amanda is quick to note. He doesn’t let it “get in the way of anything.”
That’s an accomplishment in itself, because familial spinal spastic paralysis can pose more than few hurdles in a young boy’s life.
Known also as hereditary spastic paraplegia, the degenerative genetic disorder involves the spinal cord and, typically, progressive leg and hip weakness and stiffness.
HSP, a rare condition, primarily is characterized by varied degrees of stiffness and weakness of an individual’s leg muscles and hip muscles. It often causes difficulties with the person’s gait and walking that can result in a lack of normal coordination.
Blaine doesn’t talk much about the condition, but if someone asks, “he would say that he was born like that,” his mom says.
Both Blaine’s grandfather and father “carried the gene” and have some level familial spinal spastic paralysis, Amanda said.
She said HSP only affects Blaine’s walking. “It’s all in the hip area on down,” she said. He frequently uses a special pull walker, made for smaller people, which he grips with both hands.
That doesn’t prevent him from walking on his own sometimes – for example, to the school bus many mornings, Amanda said.
“He’s so independent,” she said. “He wants to do things by himself.”
Blaine had surgery at Shriner’s Hospital for Children in Minneapolis more than a year ago; surgery involved breaking the femur in his right leg and adding a plate to help straighten his foot. The plate was removed this fall, and his ability to walk has improved, Amanda said. Partly for that reason, she said, similar surgery on his left leg is being considered.
NDAD assisted with gas mileage and lodging expenses while Blaine was at Shriner’s Hospital, about an eight-hour drive from Minot.
"It helped me a lot,” Amanda said. “We had saved up some, but we didn’t save up enough to get us down there and back.”
Amanda had heard about NDAD from a relative and called the Minot office, talking with client representative Stephanie Tornatore.
“I like Stephanie very much,” she said. “She’s very friendly. I can ask her anything and she would try to help me as much as she can. She’s very prompt on things.”
Fowler since has recommended NDAD to at least one friend who has a young daughter with a disability. “I told her, ‘Go to NDAD. They will help you.’ ”
-- Mike Brue
The writer is communications director of NDAD.
NOTE: Originally published in the winter of 2013.