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In a house that looks from the outside much like any other home in
Dos Vientos, a mother struggles every minute of every day to keep her
son alive.
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.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, please visit www.ring14.net.
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