When people picture a child’s early years, they imagine laughter, playfulness, and the gentle rhythm of growing up. But for Toby — lovingly called “Toby Toes” — life has looked very different. His childhood has been shaped not by milestones and carefree days, but by seizures, hospital rooms, and the kind of bravery no child should ever have to learn.
Recently, Toby’s mother shared a heartfelt update — one filled with worry, faith, and the fierce love of a parent doing everything to keep her child safe. In just a short while, Toby will be admitted to the hospital again. They are asking for prayers, for strength, and for a little extra grace as their little boy prepares for another round of evaluations that will shape the next chapter of his treatment.
This admission is an important one. Toby’s neurosurgeons need more detailed information. They need clearer mapping of his seizures. They need to understand exactly what is happening inside his small but determined brain so they can prepare for the next phase of surgery. It is clinical, precise work — but for Toby’s mother, it is deeply personal.
She has witnessed more seizures than any mother should ever see. She has held her son through episodes that would terrify even the strongest adult. And yet, she says, “You can never get used to them.”
Every time it happens, her heart drops. Her mind jumps into medical mode — checking protocols, stabilizing him, making sure every step is done correctly. But beneath all of that, there is the ache of knowing what Toby must be feeling… the fear, the confusion, the pain no child should have to endure. And then there are the uncertainties — the ones that keep a parent awake long after the monitors go quiet.
During this hospital stay, Toby’s epilepsy team will adjust his medications. For a brief period, under close supervision, they will even allow him to go into some of his seizures while nurses stand ready with rescue interventions. This is part of the process — a necessary pain in order to map his brain accurately — but it is something no parent ever imagines facing.
And Toby’s mother will be right there the entire time.
She cannot leave his bedside, not even to step out for a moment. And she won’t be alone — baby Hunter, Toby’s infant sibling, will be there too. As a breastfeeding mom, she had no choice but to ask the doctors if she could bring Hunter into the room. The doctors agreed. So now, part of Toby’s hospital room will become a second nursery. She will set up Hunter’s bassinet beside Toby’s hospital bed, caring for both of her children in a place where most mothers hope they never have to spend this much time.
Their hope — their prayer — is to finish this hospital stay just before Christmas and Toby’s birthday on Christmas Eve. But they know that with complex epilepsy, nothing is predictable. There is a very real chance they may still be in the hospital by then.
And if that happens… they will bring Christmas to him.
Like every year, his mom will decorate his hospital room with lights, ornaments, and a little Christmas tree — turning a place of fear into a place of comfort, warmth, and familiarity. Because that is what love looks like in the hardest moments: creating joy wherever you can.
Toby’s doctors describe his condition as “intractable epilepsy.”
It is a heavy word. A complicated one. A word that reflects years of challenges and treatments that haven’t worked the way everyone hoped they would. But even so — there is a bright, stubborn spark inside this little boy that refuses to fade.
As his mother wrote the update, Toby was playing happily at her feet, smiling as though the world around him wasn’t filled with machines, medication schedules, and medical plans. Moments like these remind her — and everyone who follows his journey — that Toby is more than his diagnosis. He is joy. He is resilience. He is light.
The family is relying on community, faith, and endless love to carry them through the coming weeks. Toby will face tests, pain, and fear no child deserves — but he will not face any of it alone. His mother will hold his hand. His little brother will sleep beside him. And countless people around the world will be lifting him up in prayer.
Toby’s fight is far from over. But neither is his strength.
With every small smile, every moment of play, every step forward, Toby continues to show what bravery looks like. Not loud, not dramatic — but steady, enduring, and full of life.
May strength surround him.
May healing find him.
And may love — the kind only a family like his can give — carry him safely through the hardest days ahead.
Please keep Toby Toes in your prayers. His journey is difficult. His spirit is extraordinary. And his story is still being written — one moment, one seizure, one beautiful heartbeat at a time.