Meet the 10-year-old boy with one of the world's rarest conditions who makes you smile
The moment I opened my laptop, 10-year-old Ephraim Lober stood next to me with a huge smile and looked at my screen.
Do you want to see what I'm typing? I asked.
Ephraim nodded.
"I always wanted to be in The Tennessean!" he said enthusiastically, drawing laughs from his mom, Mackenzie, and me.
Ephraim then gave a two-minute monologue on the soon-to-be released iPhone 15, its price, advantages and challenges before switching to a discussion of the Apple Vision Pro.
"It's a mixed reality headset," he said after noticing I looked confused. "It’ll cost $3,499. It'll be out in early 2024."
"He's a bit of a tech savant," his mother explained. "He watches all of the Apple press conferences and presentations online."
I motioned toward Ephraim's backpack, which holds a feeding pump and other medical assistance tools.
"I’m medically fragile," he said. "I was born that way.
"I have three rare genetic disorders; nobody in recorded history has had this same combination of genetics as me."
You're kind of special, I said.
"Yeah," he said, "very.”
But it's not his first-in-the-world combination of genetic disorders that makes him special. Despite seemingly overwhelming medical challenges — problems with eating, breathing and walking, to name a few — Ephraim Lober has an infectious enthusiasm and sweetness that capture the hearts of those around him.
That includes the hearts of some local filmmakers, who will debut a 34-minute documentary, "The One and Only Ephraim Lober," at 8 p.m. Friday (Sept. 1) on Nashville Public Television.
Ephraim's biggest mutually beneficial relationships, though, come through the horse therapy he has been receiving for the past six years at Franklin-based nonprofit Saddle Up!
"I'm in love with that child," 79-year-old Saddle Up! volunteer Fern Aron said, "and he's in love with me."
And Ephraim's parents are in love with Saddle Up!
"Saddle Up was the first place I saw him doing a therapy that actually looked fun," his dad, David Lober, 36, wrote in an email to The Tennessean.
"Rather than trying to name shapes or writing letters over and over, or stack blocks, he got to move around and actually learn things, like how to take care of horses, how to ride horses, how to play games on horseback."
'Please make me a normal kid'
Ephraim's multiple therapies started when he was 4 months old. He has been diagnosed with three rare genetic disorders:
Partial trisomy of Chromosome 2, which can be linked to autism and ADHD, depression and anxiety.
CACNA-1A, which can adversely affect breathing, heart rate, blood pressure and muscle development.
OCRL-1, which can cause kidney problems and blood acidity.
In addition to multiple intense therapies, Ephraim takes five rounds of medication daily.
"I would be lying if I didn’t acknowledge it’s challenging some days," Mackenzie Lober, 36, said. "Hooking up fluids, catheters, picking up 36 meds at the pharmacy, all the secretarial duties I do."
One of the worst periods came about a month ago when Ephraim, terrified, sobbed every time he thought about a triple surgery he needed to put screws in his hips, remove some saliva glands and fix a central line to put medicine directly into his vein.
"One night, I was putting my makeup on, and he was wailing and pleading with God − 'Please make me a normal kid!'" Mackenzie Lober said.
Still, with a shared and strong faith in God and a church family at Forest Hills United Methodist Church in Brentwood − "God doesn't make mistakes," Mackenzie Lober often tells her son − Ephraim almost always remains upbeat.
And he chats happily with his caregivers, nowhere more than at Saddle Up!, where everyone including Ephraim sees his improvement riding horses.
'He has little friends and they just love him'
"I started being able to ride more and longer," he said, "and I started riding without a body suit. I love this place because it’s so inclusive and I feel like I’ve accomplished something."
His parents know Ephraim has accomplished something.
"We saw his stamina improve across the board and he was able to start swim lessons, start his own pretend coffee shop in our house, Red Nose Brew," his data scientist dad said.
"But there were also other improvements over the years. His confidence in himself grew as he found something fun to do that he is good at. He’s found amazing teachers, side walkers, other participants whom he’s developed a deep bond with. Through understanding the 'emotions' that horses have, he’s better able to see other people’s perspective, which is difficult with autism."
With the horses — Dumpling and Pedro have been among his favorites — Ephraim said he feels at peace.
"Because I get to sit there and not think that I’m medically fragile," he said. "On horseback, I'm a regular kid who’s friends with the horse."
Ephraim also is a regular kid when he talks with other Saddle Up! riders, volunteer Aron said.
"In the lounge, there’s a circle around him and he’s holding court. He’s standing there talking to everyone," she said. "I went to his birthday last year, he has little friends and they just love him. He’s engaging, he’s social. You’d never know this child has so many medical issues going on."
His parents remain amazed with his progress and hopeful about his future.
"We don’t know what he future holds for Ephraim," his mom said, "but the child has passed every expectation. He wasn’t supposed to walk or talk or live to see kindergarten. He’s an incredible, verbal, mobile 10-year-old. And we will continue to encourage him to live with the maximum degree of independence."
For now, though, Ephraim has more pressing concerns.
"My iPad has a cracked screen," he told me. "I’m hoping Santa will give me a new one."
Do you know an incredibly resilient person with an amazing story? Reach Brad Schmitt at brad@tennessean.com or at 615-259-8384.
Polo players hope to score donations to help people with disabilities
What: The annual Chukkers for Charity polo match, benefiting Saddle Up! and the Rochelle Center for adults with intellectual and developmental disabilities
When: 3 p.m. Sept. 9
Where: Riverview Farm, 1475 Moran Road, Franklin, Tenn.
Tickets: $30 to $350
Tickets and information: ChukkersForCharity.net
This article originally appeared on Nashville Tennessean: Tennessee boy with an extremely rare condition makes everyone smile
