Clare’s journey began on November 17, 1969, the same year humanity made history with the first steps on the Moon. This moment of wonder and achievement mirrored Clare’s own life, full of challenges and quiet triumphs. Born into a family full of love, Clare was a bright and beautiful child, although her early years would reveal struggles her family could not have anticipated.

From the outset, Clare’s development was a concern. She wasn’t sitting up as expected, and her body was unusually floppy. Despite these signs, the doctors dismissed her condition as being a “lazy baby.” It wasn’t until a specialist diagnosed Clare at 8 months with Werdnig-Hoffman disease, a rare form of spinal muscular atrophy, that the family truly understood the path ahead.

Later in life, as more was known about SMA, Clare would describe herself as having SMA Type 2.

The diagnosis came with few resources or support, leaving Clare’s family to adapt to the new reality on their own. Clare’s life was a series of adaptations. From being carried in a laundry basket to using lightweight toys, the family found ways to include Clare in every part of their lives. Her siblings rallied around her, and together they made the challenges seem more manageable.

The road ahead wasn’t easy. Clare underwent countless medical treatments, including wearing a heavy spinal brace and enduring painful exercises, all while facing recurring lung collapses, pneumonia, and the trauma of constant suctioning to clear her airways.

Through it all, Clare remained a happy, determined soul, even as she fought the limitations of her body.

In 1988, Clare made a brave and life-changing decision: after returning from Lord Mayor Treloar College, she chose to live independently, with live-in care. It was a decision that spoke volumes about her determination and desire for autonomy, even though she required assistance with nearly every aspect of her daily life. Clare could write and feed herself, but everything else-from mobility to personal care-required help. Still, she was resolute in her choice. She wanted to carve out a life where she could make decisions for herself, even if it meant facing the immense challenges that came with living on her own.

But with this decision came an entirely new battle for the family. The journey to find suitable accommodation, that could meet Clare’s needs, along with sourcing funding for the necessary care, was an uphill struggle. The world still wasn’t designed for someone like Clare-someone with such severe physical limitations but who was also capable, intelligent, and driven. Every aspect of this fight seemed fraught with obstacles, but the family now seasoned in the art of persistence, went to work.

Despite being physically limited, Clare’s mind and spirit flourished. She taught herself sign language, became an advocate for the disabled, and joined committees to support research and improve the lives of others with SMA.

Clare’s connection with SMA UK began in its very early days, when it was known as JTSMA. Anita Macaulay, who had recently founded the charity, made contact with Clare’s family and was deeply moved by Clare’s story. Eager to learn more about the realities of living with SMA into adulthood, Anita saw in Clare an invaluable resource. Clare’s lived experience became essential in shaping the charity’s understanding of SMA beyond childhood, and she contributed greatly to its work, offering advice, wisdom, and personal insights.

In 1990, Clare’s perseverance and determination came to fruition when she finally moved into her new home, marking a significant milestone in her journey toward independence. It wasn’t just a new physical space-it was a testament to everything Clare had fought for: autonomy, dignity, and the ability to live on her own terms. The battle to secure appropriate accommodation and care was long and difficult, but it was all worth it when Clare was able to settle into a place that was truly hers.

But Clare didn’t stop there. She was determined to work, to contribute, and to prove that she could succeed just like anyone else. She was hired full time as a word processor operator with the South Western Electricity Board. This wasn’t just a job for Clare; it was a statement: Despite the many physical challenges she faced, she found a role that allowed her to use her mind, her abilities, and her determination to build a career. The job was more than just a source of income- it was a symbol of independence and self- sufficiency, and it gave Clare a sense of pride and accomplishment that was hard earned and deeply fulfilling.

As the years passed, Clare’s career continued to flourish, and with it, her voice grew louder in advocating change. She was no longer just a professional in her own right; she was a powerful advocate for the rights of disabled individuals, using her work and social platforms to fight for equality and respect. Clare was steadfast in her belief that disabled people should not be treated any differently from anyone else, and she made it her mission to bring that message to the forefront in every sphere of her life.

Her work in advocacy didn’t stop with her personal platforms; Clare’s commitment to the cause saw her become a trustee for the charity that had held her heart from the beginning: SMA UK. This was an organization that had provided support and a sense of community for Clare and family since 1988 and she was now in a position to give back. As a trustee, Clare’s voice was instrumental in shaping the charity’s direction, ensuring that its resources and efforts were focused on the right areas to support families and individuals affected by SMA.

But Clare didn’t stop there. Her involvement in the SMA community expanded even further when she became an active member of both SMA Newborn Screening Committee and the SMA Europe Adult Committee. Her role in these committees was crucial, as they focused on improving early diagnosis and care for those affected by SMA, as well as addressing the unique challenges faced by adults living with the condition. Clare’s insight, both personal and professional, made her an invaluable contributor to these groups, and she used her platform to advocate for better care, better treatment options, and more understanding from both medical professionals and society at large.

Through these committees and her work with SMA UK, Clare became a beacon of hope and advocacy, showing the world that disabled individuals had every right to only live a fulfilling life but to fight for the changes that would make life better for future generations. Her legacy with these organizations was not just about the work she did, but about the doors she opened for others to walk through with more opportunities, more rights, and more support.

Clare’s passing at the end of 2023, at the age of 53, marked the end of remarkable journey, but her legacy is far from over. Throughout her life, she faced unimaginable challenges with a strength and determination that not only shaped her own path but also paved the way for countless others. While Clare never had the opportunity to walk- one of the most profound limitations her condition imposed upon her – she left behind a gift that would continue to impact the lives of those affected by SMA long after her passing.

In her will, Clare made a deeply meaningful decision: she chose to make SMA UK a beneficiary of her estate. This was not just a financial gesture: it was a powerful testament to the cause that had become so integral to her life. Clare wanted to ensure that the incredible work of the charity continued, helping future generations of those affected by SMA. Her contribution would serve as a legacy, providing the necessary resources to support research, advocacy, and families living with the condition.

Clare’s dream was simple yet profound: for one day, just as Neil Armstrong famously said, “That’s one small step for man, one giant leap for mankind”, she wanted those living with SMA to be able to take that step too – whether literally or figuratively. Her life, though limited by her body’s constraints, had been one giant leap in itself, a leap toward greater understanding, acceptance, and progress for individuals with disabilities. In her heart, Clare knew that while she might never have walked, the advancements in care, research, and opportunities would one day allow someone with SMA to take that symbolic step, too.

In giving to SMA UK, Clare didn’t just leave behind money – she left behind a beacon of hope, a reminder that no challenge is insurmountable, and that progress is always possible, even in the face of the most difficult circumstances. Her life’s work, her advocacy, and her generosity ensured that her fight would continue long after her.

With all our love as always Andrew, Michael and Elizabeth, her brothers and sister.