Lights and laughter for little Margot

Margot is 20 months old and navigating a rare genetic syndrome that affects every part of her life. Thanks to Satan’s Little Helper, a sensory bubble tube is now bringing calm, joy and colour into her world.

Margot’s day is filled with syringes, oxygen tubes and careful monitoring. She has central sleep apnoea and requires overnight oxygen support, pulse oximeter tracking and melatonin just to drift off. Her food is managed carefully, with all liquids and medications delivered through a g-tube mic-key button (a low-profile gastrostomy tube that delivers nutrition, fluids and medications directly into the stomach). Developmentally, she’s well behind her peers.

“Margot has just learnt to roll over and still can’t sit up unassisted,” says her mum, Ellen. “She communicates in her own way but doesn’t babble, use words or sign like a typical toddler.”

The rare syndrome Margot lives with impacts every part of her life – eating, sleeping, playing and even the smallest daily tasks. But, despite the challenges, she’s an incredibly sweet, loving girl, who adores being snuggled and spending time with her family.

“She loves watching and listening to her big brother play and chat. The thing that brings her the most comfort is being close to us. She loves movement, too. Bouncing on someone’s lap or going over bumps in the pram always makes her laugh.”

A light that soothes and sparks joy

To support Margot’s sensory needs and bring a little joy into her space, Satan’s Little Helper gifted her a calming sensory bubble tube – a glowing column of gently rising bubbles and colour-changing lights.

“Lights and sounds are big sensory needs for Margot,” Ellen explains. “She loves the changing lights and even the sound of the bubbles bubbling away.”

The tube has quickly become a soothing anchor in Margot’s daily routine. In a world full of appointments, medical routines and unpredictable challenges, it gives her something she can engage with on her own terms.

“It’s just so appreciated,” Ellen says. “As a ‘typical’ second child, you tend to get a lot of hand-me-down toys. But to receive something new that’s been chosen just for her means the world.”

Finding calm amid the chaos

A typical day for the Wards is full and fast-paced – juggling medical care, activities and Margot’s therapy alongside her brother’s extracurriculars. But, through it all, there’s laughter, music, cuddles and a lot of love.

“The moments that truly capture Margot are when she’s in our arms as we’re chasing her big brother around, or when she’s snuggled up, giggling. She’s the sweetest wee thing.”

The bubble tube offers more than sensory stimulation. It’s a reminder that Margot’s needs are seen and that small joys matter, especially in the face of such big challenges.

“We’re so grateful,” says Ellen. “Having something like this, that’s both therapeutic and fun, has made a real difference. Watching her light up, just like the tube does, is priceless.”