Disease doesn’t keep pair sidelined
Published 12:00 am Tuesday, November 7, 2000
Their smiles say a thousand words even if they don’t utter a sound.
Tuesday, November 07, 2000
Their smiles say a thousand words even if they don’t utter a sound.
Lauren Ball and Miranda Cremeens were both born with spinal muscular atrophy, which is the most common genetically determined cause of infant death.
Both, however, have been fortunate enough to have been stricken with a more mild case of SMA, which leaves them unable to run, climb or even walk.
Despite the two girls’ affliction, their health holds strong and they continue to fight the battle to live, their parents say.
"(Lauren) is holding her own," her father, Jeff Ball, said. "As of right now, she has a 40-degree bend in her spine from scoliosis, which is something most SMA victims get. (Doctors) are trying to keep it braced so she doesn’t have to go through surgery."
Back surgery would require doctors to install a metal rod along the spine, he said, but is a last resort.
"They try to wait until a child reaches 8 to 10 years old," he said. "Outside of that, she’s doing great. We’ve been blessed that her condition hasn’t worsened."
He said Lauren is also involved in physical therapy three days a week.
The disease 4-year-old Lauren of Ironton, and, 10-year-old Miranda of Kitts Hill fight daily affects the motor neurons (cells) of their spinal cord and brain stem. These critically important cells are responsible for supplying special messages to muscle cells.
Without the proper input from the motor neurons, muscle cells cannot function properly. The muscle cells will, as a result, become much smaller (atrophy) and will produce symptoms of muscle weakness.
Degeneration and death of the motor neurons produce weakness in the muscles that control swallowing, breathing and limbs.
About 1-in-60 "normal" men and women carry the gene for SMA. If both a man and woman carry the gene, the child has a 25 percent chance of becoming SMA-diagnosed.
"SMA is the No. 1 inherited killer of children under 2," Ball said. "There are three types of SMA. Most kids with Type I don’t see the age of 2. We’re fortunate Lauren isn’t Type I."
Miranda, too, is lucky and happy, her mother Becky Cremeens said.
"She’s doing real well," Mrs. Cremeens said. "She’s been maintaining the same level of health for the last two years. We just received her report card and she made the honor roll. So, we’re real happy for her."
This past summer, Miranda participated in a trip.
"She traveled to Beattyville, Ky., for church camp," she said. "She really enjoyed herself there."
Recalling the adventure, Miranda said it was without a doubt an experience.
"One day (at camp), we had a relay race that required different teams to get in this mud pile and find golf balls," Miranda said. "It was a big mud pile that had lots of leftover food mixed in it. When the relay was over, my teammates started throwing mud all over me since I couldn’t run and slide in the mud with them. They wanted to include me in the fun. It was a lot of fun."
And, she has been practicing her swimming skills for exercise, she said.
"I’ve been practicing swimming and basketball, but I like swimming a lot," she said.
Mom, on the other hand doesn’t always feel so comfortable about her daughter’s love for water.
"She likes to make her mom nervous by going to the deep end of the pool," Mrs. Cremeens said with a grin at her daughter. "She loves to get herself involved in various activities. She does real well for herself."