Leading the way

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Eli turns three, starts preschool and is making historical breakthroughs for children with SMA

By Stevie Lowery

In the first weeks of Eli Bright’s life, doctors told his parents he would likely die before his first birthday.
He was diagnosed with spinal muscular atrophy (SMA) type 1, which is the most severe of the four types of SMA. The condition can create problems with breathing and eating, much less crawling or walking. It’s the No. 1 genetic killer of children.
Eli’s parents were completely devastated.
“I had a hole in the bottom of my heart,” his mother, Natalie Wheatley, said during an interview with the Enterprise in May of 2015. “When people say heartache, they don’t know what heartache is until you have a child that fights for their life.”
For the first few weeks after Eli’s diagnosis, Natalie would stay in bed with him. She said she just wanted to hide him from the rest of the world.
She had a video monitor beside her bed, and the first thing she did when she woke up was look to see if Eli’s pacifier was still moving.
Every morning, she thanked God that he made it through the night.
In a desperate attempt to save their child’s life, Eli’s parents agreed to allow him to participate in a gene therapy clinical trial in Columbus, Ohio. His parents prayed that it would work.
“Hopefully, he’s gonna be a miracle,” Natalie told the Enterprise more than three years ago.
Today, Eli is a soon-to-be walking miracle who just celebrated his third birthday on Friday, and started preschool this past Monday.
Every single day it seems Eli is achieving another milestone.
Writing his name.
Taking his first unassisted steps.
Standing up in his bed by himself.
All things that children diagnosed with SMA type 1 typically will never do.
Eli is the first child with SMA to go to school without a ventilator or any respiratory support, according to Natalie.
“I’m just on cloud nine,” she said on a rainy Thursday morning standing in her kitchen while Eli finished feeding himself breakfast – which included not one but two Toaster Strudels - and a cup of orange juice.
That might not seem impressive to some people, but it is when you consider that many of the children with SMA have feeding tubes, and are never physically able to eat real food because of their inability to swallow properly.
Eli has a very healthy appetite. In fact, if he’s not eating, he’s probably talking. On this particular morning, he’s beyond excited about his third birthday, and every single toy that is advertised on the television gets his immediate attention.
“Look! Look!” Eli shrieks while pointing incessantly at the TV.
It’s another toy commercial.
“He’s obsessed with toys right now,” Natalie said, with a laugh.
Isn’t every 3-year-old little boy?
And his face immediately lights up when he’s asked about starting preschool at A.C. Glasscock Elementary School.
Natalie admits that, initially, she was extremely nervous about Eli starting school. But, she said the Marion County Public School System has worked very hard to make sure they are ready for Eli. The playground at Glasscock will even be Eli-friendly.
“They have been awesome,” Natalie said. “They have gone above and beyond to make sure they will be able to meet his needs.”
Initially, Natalie will be attending school with Eli, and during cold and flu season, MCPS staff will provide instruction to Eli at his home because they can’t take the chance of him getting sick, which could be deadly for a child with SMA.
Eli will be in a regular classroom with other children his age, and Natalie said he’s more than ready. And, surprisingly, so is she.
“It’s gonna be fun,” she said.
Natalie actually went back to work recently after staying home with Eli for the past three years. She works with home health, and said she cried a lot during her first day, but she said it’s good to be back.
“I’m so attached to him, but going back to work was the best feeling ever,” Natalie said.
Eli’s last day of physical therapy with Cindy Robinson, a physical therapist with First Steps, was Thursday. She’s been working with Eli once a week, every week, since he was six months old. Initially, Robinson said she was hesitant about working with Eli.
“When I first took the referral, I said I couldn’t do this. I didn’t want to lose him,” she said.
And while she can’t imagine what it will be like to not see Eli every week, she knows it’s time for him to move on to the next level. And that’s a reason to celebrate, Robinson said.
According to Natalie, Eli’s doctors are convinced that the gene therapy would not have worked as well for Eli without the physical therapy that Robinson has been doing with him.
“She deserves so much credit for his progress,” Natalie said.
Eli can walk from one end of their house to the other with the help of a walker, and he recently started lifting his left leg straight up in the air without any assistance.
They hope Eli will make even more progress in the near future when he’s able to start a new treatment called Spinraza, which has shown to cure SMA. The treatment is extremely expensive, $175,000 per injection, which has caused a delay in him receiving it. But, Natalie is hopeful he will get his first treatment within the next three to four weeks. If it works, he will have to continue the treatment for the rest of his life.
“You will do whatever you have to do for your kid,” Natalie said. “I would be poor and living in a ditch if it meant this baby would be able to walk. And, we’re fixing to turn over a page that’s going to make some massive history.”