**Mother’s Heartbreak as Son Defies Grim Prognosis—But Support Remains Out of Reach for Many**
A mother from Church Village, near Pontypridd, has spoken candidly about her experiences following her son’s diagnosis with a devastating life-limiting illness—an ordeal that saw her family supported by a local children’s hospice but left her keenly aware that most similar families are forced to struggle alone. Jackie Fears’s insights shine a light on the isolation felt by many carers and the crucial lifeline provided by specialist support organisations.
Jackie’s eldest son, Greg, was described by his family as a joyful spirit, always ready with a captivating smile that stayed with those who met him. Yet at the tender age of two, Greg was diagnosed with pulmonary hypertension, a rare heart and lung condition that severely shortens life expectancy. Medical professionals predicted Greg would survive for only five more years—a prognosis that shattered the Fears family’s world.
Despite this dire outlook, Greg did not display major symptoms until he was about 15 years old. Reflecting on the early days, Jackie said, “My husband, Paul, and I were devastated and I felt like I was going to pieces.” Daily life was consumed by uncertainty and fear, and yet, remarkably, Greg remained largely unaffected by the gravity of his condition for more than a decade. “Caring day to day at home can be incredibly isolating because of the uncertainty,” she shared, acknowledging just how difficult it was living under the constant shadow of such an unpredictable illness.
The family’s trajectory changed when Greg turned 15 and began accessing support from Tŷ Hafan, a renowned charity in Wales that offers specialist palliative care and services for children with life-shortening conditions and their families. For Jackie, the hospice was the one place she could relinquish her role as carer and instead be simply a mum to Greg. “It was invaluable to have professionals share the burden, even just for a short while,” she explained.
As Greg grew older, Tŷ Hafan’s gardens became a sanctuary for him, particularly after the social isolation brought by the COVID-19 pandemic. However, time eventually caught up with Greg. In July 2022, he suffered a stroke—a turning point after which Jackie knew their precious time was limited. Greg died on Valentine’s Day in 2023, surrounded by the love of his family and the unwavering support of Tŷ Hafan staff.
Jackie speaks candidly about the profound impact this support had, continuing even after Greg’s passing. “Having Tŷ Hafan in our lives has been totally life-changing,” she said. “The journey of caring is filled with challenging periods, but knowing there’s someone you can reach out to prevents that dreadful feeling of being alone.” She is especially grateful for the bereavement counselling and outreach provided, adding, “It’s been over two years, but in some ways, Greg’s loss feels as raw as ever. Grief doesn’t get smaller—you just grow around it.”
Tragically, Tŷ Hafan’s resources are stretched so thin that they can assist only one in ten families who find themselves in similar circumstances. Jackie is left deeply troubled by this statistic. “It actually breaks my heart to think of the nine other families like us who aren’t able to access this lifeline. I genuinely don’t know how we would have coped without them.”
Tracy Jones, who leads family wellbeing and outreach services at Tŷ Hafan, emphasised the scale of the unmet need: “No family should have to experience the heartbreak of a child’s life-limiting illness without support. As we mark the start of Children’s Hospice Week, we celebrate the vital work happening, but want to remind everyone that much more remains to be done.”
Currently, Tŷ Hafan supports around 300 children with life-shortening conditions and nearly 3,000 family members across Wales, offering palliative care that addresses not only physical health but also emotional, social and spiritual needs. The charity’s commitment extends from the point of diagnosis, through end-of-life care, and beyond into bereavement. Information on donating or accessing support can be found at www.tyhafan.org.
Jackie’s story stands as a powerful reminder of both the enduring pain and the remarkable resilience found in families facing unimaginable challenges. It prompts the urgent question of how society can do more to ensure that no parent, like Jackie, ends up walking this road alone.