MARINE CORPS BASE CAMP LEJEUNE, N.C. -- It’s 3 a.m., and the monitors keeping track of Ezekiel Johnson’s heart beep loudly in the home of Staff Sgt. Donald Johnson, the staff noncommissioned officer in charge of the Indoor Simulated Marksmanship Trainer aboard Marine Corps Base Camp Lejeune.
Johnson jumps from his bed to his 2-year-old son’s crib a few feet away. It’s time to go to the emergency room at Chapel Hill Hospital.
Ezekiel has a rare congenital heart defect called hypoplastic left heart syndrome, which the local hospitals can’t treat because special medical equipment is needed to maintain his health.
In babies with HLHS, the aorta and left ventricle are underdeveloped before birth. The right ventricle must then perform twice as much, a situation which cannot be sustained for long.
Matt Hammitt, singer of Sanctus Real, a Christian band from Toledo, Ohio, has a 3-year-old son, Bowen, who also was born with the same rare heart condition as Ezekiel.
Johnson learned of Hammitt’s son while listening to the radio during Shelly’s pregnancy with Ezekiel. Being fans of the band, the Johnsons followed the Hammitt’s story.
After finding out about Ezekiel’s condition, Shelly, Johnson’s wife, found a Facebook page for mothers who have children with HLHS.
Shelly met Hammitt’s wife, Sarah, quickly became friends.
During Sanctus Real’s tour stop in Jacksonville, N.C., Johnson and Hammitt coordinated a visit for the band to come aboard base.
“There’s a bond between parents who have children with heart defects,” said Hammitt. “We call ourselves ‘heart parents.’ That bond is really beyond words, and I can’t explain it. We both stand together for our families and know how hard it has been for each other.”
Sanctus Real visited Johnson and the ISMT Marines aboard base to find out a little more of how Marines train, Saturday.
“As I was firing the weapons, I kept reminding myself these guys do this for real,” Hammitt said. “Donald and I have a lot in common because I have to leave my family to tour, and he has to do the same thing during his deployments. What he does is so much more difficult and dangerous, because he has to face gun fire. I have so much respect for him being a Marine and still being a great dad to his family.”
Johnson and Hammitt talked about some of the hardships they’ve dealt with over the years, how their families helped with getting through those hard times and how blessed they have been with their sons.
“Children with HLHS have to go through many open heart surgeries,” Johnson said. “Both Ezekiel and Bowen are among the fortunate few who not only survived the first surgeries, but are doing very well.”
Ezekiel is not the only child of Johnson who has a medical condition though.
Samuel, Johnson’s 3-year-old son, has a different medical condition where his stomach does not function properly.
“My sons have been through a lot of surgeries,” Johnson said. “Every child gets sick. That’s just a part of life. When my sons get sick, it’s a lot more of a serious situation because they have to have tests done and go through a whole process at the hospital to make sure they stay safe.”
The Johnson family keeps bags packed for when either Samuel or Ezekiel need to go to the emergency room.
“My other children have been absolutely fantastic with helping with Samuel and Ezekiel,” Johnson said. “We have nurses helping out, and it’s really a group effort with the doctors, nurses and my family to all be the guardian angels for my sons.”
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