2009-07-23 / Family
'Angelic' Thousand Oaks boy has rare genetic condition
When 8-year-old Elijah isn't having a seizure, his mother, Terri Granard, is still on alert, watching and waiting as she has every day since Elijah was 6 months old, prepared to give lifesaving resuscitation.
"It's like waiting for a car crash that you know is going to happen," she said.
Elijah appeared to be healthy when he was born on Aug. 29, 2000, after a normal pregnancy, his mother said. He was welcomed into the family by his 1year-old bigger brother, Noah.
Then, on Feb. 18 the next year, Granard and her husband, Ryan, woke up to Elijah having a seizure.
"My husband asked, 'What's wrong with Elijah?'" she recalled.
His question wouldn't be answered for some time. The first event was thought to have been triggered by a fever. But the next day Elijah had another seizure, and "boatloads of testing with Xrays and blood tests" followed, according to his mother.
No cause for the seizures could be found.
Finally, a DNA survey with a chromosome analysis revealed that the baby had a condition called ring chromosome 14 syndrome, or ring 14. Elijah is one of 300 known cases in the world, his mother said. Ring 14 is a rare, noninherited genetic condition.
The medical community said the prognosis regarding Elijah's longevity was poor—that he would live only until age 2 or 3. In addition to the seizures he's had strokes.
In a few weeks Elijah will turn 9. Those who gave him just a few years to live didn't take into account the determination and love his family has for him.
His big brother is an "awesome, smart" fifth-grader who helps his brother a lot, Terri Granard said.
And one of the family dogs, a rescued Doberman, has, without training, learned to signal with one bark moments before a seizure occurs.
When Elijah has a seizure, which usually happens one to five times a day, he stops breathing, turns blue and becomes limp like a rag doll, his mother said. The family employs a fulltime nurse to help out with Elijah.
Sometimes he has days with no seizures.
"That's a really good day for our family," Granard said.
But when a seizure does occur, Elijah must be quickly revived. A device similar to a pacemaker, medically imbedded in his chest, stimulates nerves in the chest with electrical impulses. A magnet is used to swipe his chest for an extra jolt. CPR is also necessary.
When he's not having seizures, Elijah behaves mentally like a 1-year-old child due to brain damage from the lack of oxygen when he stops breathing during the seizures.
"He has suffered brain damage similar to a near-drowning victim," his mother said.
He watches the Wiggles on TV. He's fed through a tube. Elijah crawls but cannot walk. He's learning sign language, but every time he has a stroke he goes back to square one, his mom said.
"He is the happiest little boy despite his medical situation. He also has the most angelic face," Terri Granard said.
For more information, go to www.ring14.net.