Hope, Community and Living a Full Life with SMA

Many of you will have seen the recent news that Jesy Nelson has shared that her twin daughters, Ocean Jade and Story Monroe, have been diagnosed with Spinal Muscular Atrophy (SMA). It’s an announcement no parent ever expects to make, and our hearts go out to Jesy, her partner Zion, and their family.

Jesy spoke openly about SMA affecting muscles throughout the body, including movement, breathing and swallowing, while also sharing her belief that her daughters will defy the odds with the right support and treatment. That hope matters.

As someone who has lived with SMA Type II for over 50 years, I wanted to gently add another voice to the conversation. Not as a medical expert, but as someone who knows what it’s like to grow up with SMA and build a full, meaningful life alongside it.

SMA can feel overwhelming at first. There’s a lot to learn, a lot to process, and a lot of fear wrapped up in the unknown. But there is also community. A strong, supportive, resilient community filled with people living rich, varied lives, raising families, building careers, travelling, creating businesses, and contributing to the world in powerful ways.

The treatments now available are extraordinary and genuinely life-changing for many children. And even when life doesn’t follow the path you hoped for, it can still be full of joy, pride and possibility.

At PA Pool, we believe deeply in independence, support, and people being able to live life in a way that works for them. Many members of our community live with SMA and other neuromuscular conditions, supported by Personal Assistants who enable freedom, opportunity and choice.

To Jesy, and to any family receiving a new diagnosis right now: you are not alone. There is hope. There is support. And there is a future that may look different than you imagined, but can still be beautiful.