When you’re a 3-year-old boy and the Lowcountry sees a rare snowfall, you have to play in it, right?
For Elliott Wright of Estill, who is called EJ, playing in the snow required his doctors’ approval.
EJ was born with a heart defect — hypoplastic left heart syndrome. His mother, Jazmin Walker, explained that means the left side of his heart didn’t develop correctly while she was pregnant.
Her son had two open-heart surgeries before he was 6 months old; the first one was just five days after he was born.
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He was scheduled to have another surgery last fall around the time of his third birthday, but doctors had some bad news for the family: EJ was experiencing heart failure.
Now, he is waiting for a heart transplant at Medical University of South Carolina Children’s Hospital in Charleston.
Mom and son have been living at the hospital full-time since Sept. 5, just waiting for a heart to be available.
“He’s at the top of the list, so a heart could come any day, or it could take up to a few months or a year,” Walker said.
The rare 4 inches of snow that blanketed the Lowcountry a week ago was a welcome distraction for the boy.
“It was his first time seeing snow,” Walker said. “He loved it!”
EJ’s doctors agreed to a short break from his IV so the little boy could play.
“He’s on this medicine ... that he has to be on 24/7, but they let him get a 30-minute break to go outside,” Walker said.
An MUSC photographer snapped some photos of EJ and his mom romping around, laughing and making snow angels.
A short half hour later, the little boy with the big smile was back in his hospital room, once again hooked up to the medication that is keeping him alive.
A post about EJ’s snow day on the hospital’s Facebook page had more than 5,200 reactions and more than 1,800 shares.
“These are the moments we take for granted,” one person commented.
“So awesome! Wishing him years of snowflakes to enjoy!” posted another.
EJ’s family set up a Go Fund Me account to help with the family’s expenses. It had raised just over $1,100 of the $10,000 goal as of Thursday afternoon. There also is a Facebook page called “EJ’s Fight” set up for those who would like updates.
“I pray for a cure. I pray for a miracle to happen,” Walker posted on the Go Fund Me page. “I pray for EJ’s heart and health issues to do a whole 360 ... so there won’t be a need for transplant!”
Meanwhile, the family waits.