Dylan’s story: Palliative care gave us choice

When Sarah and Will’s son Dylan was diagnosed with the rare neurodegenerative condition Sandhoff disease at 18 months old, their world changed overnight.

The first signs of Dylan’s condition didn’t appear until he was six months old. It started with difficulty weaning onto solids and subtle motor delays, later progressing on to seizures and the need for round-the-clock care, including a feeding tube and respiratory support.

Yet despite the challenges their family faced, Dylan was able to spend the majority of his short life at home, surrounded by those who loved and knew him best.

Their experience shows what is possible when children’s palliative care is properly coordinated across hospitals, hospices, community services and home care. It also highlights a stark reality, that families in many parts of England are missing out on precious moments at home, because too often the support they receive depends on where they live and not what’s needed or right for their family circumstances.

Feeling isolated in hospital

Shortly after Dylan’s diagnosis, the pandemic hit, during which Sarah vividly recounts spending long periods in hospital with Dylan, isolated from the rest of the family.

“Being in hospital meant he couldn’t go outside. We didn’t have any of his equipment to help with standing and sitting, so he was restricted to his hospital bed with limited opportunities to move or change positions.

“It also meant as a family, we were all separated because it was during COVID. I was pregnant with our second child, and I don’t think either of us felt that Dylan was getting the best quality of life. So, when the hospice rang and they said, ‘do you want a way to get him out of hospital?’ it felt like such a relief.”

Palliative care gave us choice

That moment transformed the family’s understanding of what was possible. Rather than focusing solely on treatment, NHS professionals began working directly with Haven House’s multi-skilled team to help the family take control of the situation and understand the choices they could make during the time they had left with Dylan.

“Until that point our approach was very much ‘the doctors know best and they’ll tell us what to do’. Whereas the concept of palliative care is very different. Knowing that there were choices we could make; that was a really important moment for us as a family.”

Over the following two years, a network of services unfolded that ultimately made it possible for Dylan to be exclusively cared for at home. During that time, Sarah and Will welcomed his newborn brother, Benny, into the family, with Dylan able to play a major part in family life rather than spending long periods away in hospital.

“With the help of all those different teams working together, it meant that we were very much supported to care for him at home. We achieved that through being able to make very clear choices about not being admitted to hospital and what we felt would give him the very best quality of life. After that point, we never went into hospital again.”

Surrounded by love at home

Thanks to coordinated support from specialists at Great Ormond Street Hospital, community nurses and their local children’s hospice, Haven House, including its hospice-at-home service, Dylan was able to spend most of his life at home with his family, surrounded by the people who knew and loved him best. Together these services helped ensure he received the care he needed in familiar surroundings and enabled his family to make the most of their time together.

Ultimately, this meant that his parents’ wish for him to die at home was fulfilled. When Dylan died in January 2023, shortly before his fourth birthday, with his parents by his side, he remained at home for several days afterwards, giving family and friends precious time to say goodbye.

Sarah said: “Palliative care gave our family something fundamental – choice. It helped us understand that hospital was not the only option, and that the right support could keep our family together at home – not just at the end of Dylan’s life, but throughout his life.

“At the end of his life, it was a beautiful thing to have him at home. I can’t really imagine it any other way. It breaks my heart to think of other families in our situation, not being able to have that same level of care and support.”

Dylan’s legacy

Dylan’s family were able to achieve their wishes because the right services were commissioned locally and delivered in partnership. But Sarah knows not all families have that opportunity:

“I’m very aware of how fortunate we were. But Dylan’s experience shouldn’t be exceptional. Everyone should be able to receive the same standard of care regardless of where they live. That ability to choose means everything. It’s heart breaking to think some families don’t get that chance.”

Sarah and Will continue to live in London and have recently welcomed a third child, Saunton, aged 1, alongside Benny, now aged 4. Inspired by Dylan, Sarah is now retraining as a music therapist, while also using her lived experience to make a powerful contribution to our advisory council, helping to shape the work of Together for Short Lives and the wider children’s palliative care sector.

Sarah shared Dylan’s story with us in support of our report – Home first, except when it matters most – which reveals significant variation in how local NHS bodies in England commission children’s palliative care.