When news emerged that former Little Mix star Jesy Nelson’s twins had received a Spinal Muscular Atrophy diagnosis, it sparked an outpouring of public support. Messages of love flooded social media, headlines shared updates, and a very personal and frightening experience was made visible to millions.
That visibility matters. But what matters just as much is what happens after the headlines fade.
For countless parents across the UK, receiving a medical diagnosis during pregnancy or shortly after birth is not a one-off news story. It’s the beginning of a journey filled with uncertainty, fear and life-altering decisions. Most of these families will never have a platform or a public voice and instead many turn to charities for guidance, reassurance and hope.
A diagnosis whenever it is received can feel like the ground shifting beneath you. Parents often describe an overwhelming mix of emotions, grief for the future they imagined, anxiety about what lies ahead, and confusion as they try to absorb complex medical information in a short space of time.
In these moments, charities are often the first place families find clarity. Here at Newlife The Charity for Disabled Children, our free national Nurse Helpline offers emotional and practical support to families caring for children with disabilities, including specialist health information and support. They translate medical language into something understandable. They provide a helpline, signposting and sometimes simply a voice at the end of the phone saying: you are not alone.
This support is not a ‘nice to have’. It is essential.
Charities working to support children with disabilities or a terminal illness fill gaps that statutory services often cannot. We step in to provide continuity, emotional support, and tailored information long after families leave the hospital.
For parents navigating appointments, treatment plans, financial strain, or the emotional toll of caring for a child with additional needs, charities often become trusted partners for years, not weeks.
High-profile cases like Jesy Nelson’s briefly bring these issues into the public eye, but media attention is often fleeting. Once the immediate news cycle moves on, so too does the wider conversation about the realities families continue to face.
We know that many of the challenges parents encounter include long waiting times, inconsistent care pathways, limited mental health support, inadequate financial assistance. And these topics are what charities like Newlife have been raising as concerns for years.
Here at Newlife, we campaign and advocate on behalf of our families to give them a voice. We don’t just help families cope within the system; we work to change the system itself. From speaking with our families, we understand lived experiences, identify patterns of inequality or failure, and share these stories to policymakers.
We do this on behalf of families who are often too exhausted, overwhelmed or emotionally stretched to advocate for themselves. We know that many are tired from having to fight or battle on behalf of their child or for some they simply do not know where to go.
We campaign for clearer guidance, responsibility and more equitable access to care and will continue pushing these issues onto the agenda, so more families are heard.
By campaigning we are not just responding to crises, we are preventing future ones. By supporting families early, advocating for better systems and amplifying voices that might otherwise be lost, we are joining others to create a society that is more compassionate, informed and fair.
Jesy Nelson’s openness has helped shine a light on a reality many families live every day. The challenge for us all is to ensure that the light doesn’t switch off once the headlines do because for every story that makes the news, there are thousands that don’t. And for those families, charities remain a constant from emotional support to campaigning and speaking up when others cannot.
