CLEBURNE (CBSDFW.COM) – A Cleburne couple was shocked when doctors told them that their baby had a rare medical syndrome. They were stunned when they discovered that their 4-year-old had it, too. They have insurance but, like many in the current economic climate, they are not only worried about double surgeries, but double medical bills.
Lukas Love likes to move. But at nearly 8 months old, he should be doing more. His mother, Katie Love, said, “From what I understand, at this point, he definitely should be rolling.”
Lukas should also be sitting by himself, but he tires easily. Love, a social worker, noticed he wasn’t developing right. “He had some mild scoliosis. Like, one side of his back was a little higher,” she said. But Doctors told her there was more.
Lukas has Tethered Spinal Cord Syndrome. It means he was born with an abnormal attachment at the end of his spinal cord. “So, it holds it tight. And, when they grow, it pulls,” Love explained.
Then, there was Kaylie. “She would wake up screaming. Her legs were hurting real bad,” Love said. As it turned out, Kaylie has Tethered Spinal Cord Syndrome, too.
Dr. Fernando Silva is a neurosurgeon, but not the Loves’ doctor. “Typically, it is in one child, but not in siblings,” Dr. Silva said. Doctors say the sooner children have surgery after symptoms appear, the better the chances for recovery.
Kaylie already knows she will be having surgery. “When they cut my back open, I’ll be asleep!” Kaylie said.
“Both my kids are going to be put to sleep in the same day. One right after the other,” Love said nervously. What also makes her nervous are the double medical bills the family will be facing, while still paying the old ones. “We have good insurance, but the deductible is $5,000 a kid,” Love said. She only hopes that moving her children forward physically will not set the family back financially.
Both children are scheduled for their surgeries February 17.
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