Meet Charlie 💛

I have known Charlie since he was born. He is an extremely smiley 18-month-old boy with an older sister, a pet dog and amazing parents. He also has Spinal Muscular Atrophy, Type 1.

SMA1 is a genetic neuromuscular condition that causes the nerve cells responsible for muscle movement to gradually deteriorate. As those nerve cells can’t send strong enough signals, the muscles become extremely weak, impacting his breathing, feeding, movement and coughing.

SMA isn’t currently included in routine new-born screening in the UK, even though a simple test at birth can identify it before symptoms appear — giving children like Charlie access to treatment early enough to stop the condition from taking hold.

For Charlie’s parents, daily life involves a level of planning and vigilance that most people never have to think about — managing equipment, therapies, hospital appointments, fatigue, breathing support, and the constant need to adapt. It’s a lot to carry, every single day.

And yet, every week, there is a place that brings them genuine joy, a strong sense of community and the chance to witness Charlie’s progress: Small Steps 💛

Small Steps supports children from birth to age five with conditions such as cerebral palsy, motor impairments, syndromes and sensory challenges — and like Charlie, they often need extra support to reach milestones that others take for granted.

The charity is a lifeline.

And it is 100% free for families.

Small Steps receives no statutory funding. They rely entirely on charitable grants, fundraising, and donations to keep their doors open and their sessions accessible to every family who needs them.

This charity has become a vital part of Charlie’s development. The time together gives him the chance to work on movement, coordination, communication, and confidence — all through a structured programme designed specifically for children with physical disabilities. The team of teachers and physiotherapists understand exactly what each child needs and how to help them move forward at their own pace and I have had the privilege of watching these sessions first hand.

For Charlie’s parents they get to see their son engaged, supported, and achieving things that once felt out of reach. They leave each week feeling encouraged and understood, surrounded by other families who truly get the emotional and practical realities of raising a child with disabilities. That sense of connection is something that they and all the other supported families look forward to every week.

As a parent myself — with a son who has epilepsy — I understand what it means to live with uncertainty. That perspective is part of why I feel so strongly about supporting the organisations that make a real difference.

To help raise awareness and funds for this incredible organisation, I’m taking part in the South Coast Ultra Challenge in September, walking continuously for 100km, for what could take 24 hours.

If you are able to donate and/or share this post it would mean a great deal. Your support will help Small Steps continue their essential work for children like Charlie and the parents who show up for them every day.

Thank you for reading 💛