Bereavement in Focus

Michael McGrath MBE, founder and CEO, Muscle Help Foundation, sets the scene on a substantial body of work driven by our friends at The Muscle Help Foundation in partnership with the University of Hertfordshire, which looks at how we can better understand and support families through grief and bereavement. Reproduced with permission, copyright Rare Revolution Magazine.

The journey of living with a rare neuromuscular disorder like muscular dystrophy (MD) is a deeply personal, often isolating experience. From insights drawn over the past 22 years from the Muscle Help Foundation (MHF) charity, it is a journey that requires resilience, adaptation and relentless advocacy. In spotlighting bereavement, MHF worked closely in partnership with the University of Hertfordshire, deepening its knowledge and learning about loss.

For families, especially parents, the muscle wasting condition shapes every facet of daily life: from navigating complex care systems to managing clinical uncertainties, from celebrating small victories to carrying the constant weight of anticipatory grief.

When a young life is ultimately lost to muscular dystrophy, the impact is seismic. The loss reverberates not only through the family unit, but also through the wider community of healthcare providers, support workers and those who walked alongside them.

Bereavement in this context carries unique emotional and psychological challenges. Unlike sudden or unexpected loss, the death of a child with a progressive neuromuscular condition comes after years, sometimes decades, of selfless care, unconditional love and incremental loss.

From MHF's direct experience, made up of conversations with parents that have lost their predominantly 'Muscle Warrior' sons, mums or dads, do not grieve in isolation from this journey; they grieve with it. That's why sensitivity around bereavement in this specific community is not just important, it is, MHF believes, essential. Understanding the contours of this grief is key to helping often vulnerable families make sense of their loss in a way that honours their child's life, their memories and legacy, and importantly, allows them to carry that remembrance forward without being overwhelmed by it.

The MHF charity, which delivers highly personalised

'Muscle Dream' experiences for vulnerable children, young people and young adults (8-28yrs) living in the UK with muscular dystrophy and allied neuromuscular conditions, has long recognised this complexity. The charity's model is rooted not only in delivering joyful, confidence-building, memory-making moments but in fostering long-term relationships with families. These bonds become especially meaningful in the event of a child's passing, because when that moment comes, the memory of the 'Muscle Dream' becomes more than just a moment-in-time. It becomes a cherished story, a symbol of identity and positivity, and a source of light amid the darkness of loss.

This continuity of care, beyond the 'Muscle Dream' intervention, beyond the moment when it was realised, is where the charity's impact is often most deeply felt.

Families continue to be active participants within what the charity calls its 'Muscle Warrior tribe' —a growing community bound by shared experience, mutual support, social connection and an understanding that does not need to be explained. From internal feedback and research conducted by the charity, it is clear that this community plays a 'significant part' in how bereaved families process and hold on to the memory of their loved ones. Through events, legacy touchpoints and ongoing contact, families remain connected, not just to the MHF organisation, but to each other.

For medical professionals, researchers and allied health teams working in neuromuscular care, this model of holistic, longitudinal support is worth noting. It offers a framework for how third-sector organisations can work alongside clinical services to address the broader psychosocial needs of families, particularly in the aftermath of bereavement. It also reinforces the value of relationship-based care in rare disease communities, where for example trust, familiarity and continuity are not just beneficial, but, in MHF's eyes, essential.

To the families who are still on this journey, who are caring for sons or daughters living with muscular dystrophy or allied neuromuscular conditions, the 'Muscle Warrior tribe represents a space of shared language and lived understanding. And for those who have experienced loss, it is a space where their child's name is still spoken, their life still honoured and their legacy carried forward in ways that offer comfort, dignity and real meaning.

In a landscape where clinical outcomes often dominate the narrative, the Muscle Help Foundation charity reminds us that memory, connection and community are just as vital to the long-term wellbeing of families. In remembering the children who have passed, and in walking with the families who loved them, the charity does something rare: it bridges the gap between grief and hope, between the end of one journey and the quiet beginnings of another.

For more information, please visit musclehelp.com

Additional insights

Written by

Dr James Randall: principal clinical psychologist and clinical lead, Somerset NHS Foundation Trust

Dr Lizette Nolte: clinical psychologist and research lead for Doctorate in Clinical Psychology Programme, University of Hertfordshire

Prof David Wellsted: head of Health Research Methods Unit (HRMU) in the Centre for Health Services & Clinical Research, University of Hertfordshire

"Facing Loss and Finding Hope in Narrating Together - Accounts of Parenthood Following the Death of a Child to Muscular Dystrophy"

A research paper on bereavement, which is an open access paper, meaning anyone can download and access freely via: journals.sagepub.com/doi/10.1177/10541373211013719

- according to the authors, the peer reviewers were very complimentary about the work of the charity and it seemed like they really empathised and understood specifically the parent's journey from the paper, and the ways in which they have coped and grown since, with the legacies of their children (aka 'Muscle Warriors') and the support from the Muscle Help Foundation charity.

'Sounds Like Therapy'

This published paper speaks to the benefits of taking part in research; it explores the more therapeutic side of things/helpful nature of having a set space to discuss the good and the difficult. The authors are: James Randall. David Wellsted and Lizette Nolte (via University of Hertfordshire). The 'research context' was inspired by the couples who participated in a research study exploring the accounts of parents who had lost a child to muscular dystrophy. The couples involved in this study opened up their thinking about how we conduct research, the ways in which we work therapeutically and how we relate to others outside of our professional contexts. We have written about the findings of this research in greater depth elsewhere, particularly in relation to loss, muscular dystrophy and a wish-fulfilment event called the 'Muscle Dream' (Nolte et al., 2017; Randall-James et al., 2019).

"Researching the Muscle Dream experience through a series of invitations: Dialogues, connection and change"

A 'Muscle Dreams' based research article which gives more evidence to the Muscle Help Foundation's work and something a Iittle extra to some of the other publications achieved thus far by James Randall, David Wellsted and Lizette Nolte (via University of Hertfordshire). This particular article was published by the Association of Family Therapy (AFT) - as a result, I'm informed that >2000 family therapists, all of whom are AFT members, across the UK (to whom this publication is distributed) will learn more about the charity's 'Muscle Dream' interventions, so good awareness.

Publications:

New insights revealed from bereavement research of parenthood following the death of a child with Muscular Dystrophy

musclehelp.com/bereavement-research-project-1

Facing Loss and Finding Hope in Narrating Together:| Accounts of Parenthood Following the Death of a Child to Muscular Dystrophy

musclehelp.com/bereavement-research-project-2