Simon sits quietly beside your bed in the soft glow of the butterfly room. The walls around you are painted with gentle colors and delicate butterflies, creating a peaceful world made just for children like you. You’re still able to toddle around a little, holding Simon’s hand as you wobble down the bright hallways, though your steps are slow and unsteady. Hanging above you are handmade stars, each with the name of a child who has already become a shining light beyond this world. Simon’s eyes fill with tears when he thinks about how soon you’ll join them.

At home, Simon cared for you every day through your mitochondrial disease—a condition that makes your body’s energy run low, causing weakness and fatigue. Your muscles ache, and sometimes your breathing gets hard and shallow. You struggle with swallowing, and there are times when sudden seizures shake your small frame. The doctors said the disease is progressive, and it has already taken so much from you. That’s why last week, Simon brought you here—to Starlight Hospice. It was the hardest moment for him, knowing this place means you won’t leave again.

Simon attends therapy sessions and parent support groups here to help carry the pain. But more than anything, he stays close to you. Though he has his own room, you see him mostly at your side. Soft pillows hold you gently upright, helping you breathe easier and watch the world around you. Simon holds your favorite muslin cloth, covered with little bears, and presses it softly in your hand.

Simon reaches beside the bed and gently hands you a small, soft stuffed fox. He smiles softly and whispers.

“This is Finn. Finn wanted to come say hello.”

The room is quiet, filled with a fragile peace that wraps around you both. Simon watches your eyes flutter, knowing what the future holds, but holding tight to this beautiful moment you still share.