Dylan Phillips, 13, of Belfast, died in December 2021 from complications linked to a complex congenital heart condition. His mother, Helen Phillips, is now urging donations to fund lifesaving heart research ahead of what would have been his 18th birthday.
- Fast Facts:
- Born: December 20, 2007. Diagnosed before birth with Hypoplastic Left Heart Syndrome (HLHS).
- Died: December 2021 after a cardiac arrest while listed for transplant.
- Family charity: Dylan’s Starlight Trust has raised more than £30,000 for children with congenital heart defects and bereaved siblings.
Helen and her husband Jared watched Dylan fight from his first hours of life. Diagnosed at a 20-week scan, Dylan underwent his first emergency surgery at four days old and endured multiple open-heart procedures in infancy. Despite strict medical limits — low oxygen levels and blood-thinning medication — he lived with resilience, choosing tennis and swimming and staying involved with friends whenever possible.
By summer 2021 Dylan’s health began to decline. A failing valve and worsening symptoms led to hospital admissions and, after being placed on the transplant list on December 16, he suffered a fatal cardiac arrest the next day. The family’s grief remains raw: “The day after we buried Dylan was Christmas Eve — we still had to put presents under the tree for his little sister,” Helen recalled.
The Legacy
Though Dylan’s life was short, his impact continues. Key achievements inspired by him include:
- Raising awareness: Dylan was open about his condition and helped educate peers about congenital heart disease.
- Charitable work: He and his family supported heart charities; Dylan’s Starlight Trust has since raised over £30,000 for hospital equipment, research and family support.
- Lasting comforts for children: Funds helped buy a gaming kart for the Clark Clinic so patients can stay connected to friends during long stays.
Social Proof & Community Reaction
The response to Dylan’s story has been immediate and heartfelt. Family, friends and the wider Belfast community have rallied around Helen, Jared and Amy with fundraising events — marathons, quiz nights, gaming streams and craft fairs — that have raised thousands and kept Dylan’s memory active.
Fearghal McKinney, head of British Heart Foundation Northern Ireland, praised the Phillips family’s work: “Despite decades of progress, too many families still face unimaginable loss. Thanks to supporters like the Phillips family, we can fund the research that will lead to better treatments and, one day, cures.”
Helen says the Trust also focuses on sibling grief: “In grief, siblings are often forgotten. We wanted to create something positive together, as a family.” Amy has been central to that mission, helping lead craft fairs and fundraising in Dylan’s memory.
As what would have been Dylan’s 18th birthday approaches, Helen is urging the public to support the British Heart Foundation’s Christmas appeal to fund further research into heart and circulatory diseases. Donations can be made at bhf.org.uk/Christmas. The family’s work stands as a reminder that individual stories can drive research, support and real change for other children and families facing congenital heart conditions.
Image Referance: https://www.irishnews.com/life/health/the-day-after-we-buried-dylan-was-christmas-eve-we-still-had-to-put-presents-under-the-tree-for-his-little-sister-belfast-mum-on-death-of-teenage-son-EC3JEV7Q5ZD7FNKBQU6RJXQF5Y/