‘My son died on Valentine’s Day. It’s awful others don’t have support we did’
A mum-of-three whose son was tragically diagnosed with a life-limiting condition aged just two said it breaks her heart to think there are other families who don’t have the support she did when her son was unwell.
Jackie Fears, from Church Village, near Pontypridd, has bravely opened up about her eldest son Greg. The young man, described as “such a character” with the “most enigmatic smile” by his family, sadly died on Valentine’s Day in 2023.
“I honestly feel that when Greg died, part of me went with him,” Jackie said. Get the latest Ponty news first by signing up to our newsletter here
At the age of two, Greg was diagnosed with pulmonary hypertension – a life-shortening heart and lung condition – with a prognosis that he would only live for a further five or so years.
“My husband, Paul, and I were devastated and I felt that I was going to pieces,” she said.
Greg, however, suffered no serious symptoms of his condition until he was 15, and it was then that he and his family started to receive support from Tŷ Hafan.
“This is the only place where I could just be his mum. And it was so nice to let the carer part of me go for the time that we were here – I could just be his mum,” Jackie said.
Greg, in fact, lived well beyond the initial prognosis of five years, cared for at home by Jackie. “When you’re at home caring day to day, it can be very isolating. It’s the uncertainty and the worry,” she explained.
In later years, and especially after the pandemic, Tŷ Hafan’s gardens became Greg’s “safe space”.
In July 2022, Greg had a stroke and Jackie said: “It was then just a question of time.”
Greg died on Valentine’s Day 2023, surrounded by his family, and supported by Tŷ Hafan.
“Having Tŷ Hafan in our lives has been totally life-changing,” Jackie explained. “It is worrying caring day-to-day. There were times which were far more challenging than others. But if you’ve got somewhere to turn to, to even just talk it through, it stops that awful feeling of isolation.”
Jackie added that the ongoing support Ty Hafan have provided since Greg’s death has made a “real difference”.
She said: “It’s been two years and nearly four months since we lost Greg. But to me, that’s no time at all.
“I don’t think that anything prepares you for when it actually happens. Grief affects you in so many ways – such a complex and confusing and messy emotion. I am moving further away from a time that I was actually with Greg, that I held his hand.
“I honestly feel that when Greg died, part of me went with him. And it doesn’t mean to say you don’t feel joy like with the birth of our grandson, but the sadness is still there and you’re not moving on, you are moving forward.
“All the things that are going to happen like our son and his girlfriend are getting married, but it’s always going to be without Greg so to have Ty Hafan to turn to when it gets just a little bit too much has made a real difference.”
Each year, Tŷ Hafan supports around 300 children with life-shortening conditions and around 3,000 family members by providing specialist palliative care addressing the physical, emotional, social and spiritual needs of each member of the family. From diagnosis to bereavement, Tŷ Hafan is there for the family as long as they need, through life, death and beyond.
However, Tŷ Hafan is only able to help 1 in 10 families who need support. “I find it really upsetting and it actually breaks my heart to think that alongside us there are nine other families who aren’t accessing the support we have had. I’m not sure how we would have coped doing this on our own,” Jackie said.
Tracy Jones, director of family wellbeing and outreach services at Tŷ Hafan, said: “No family should have to live their child’s short life alone.
“We know that there are many more children with life-shortening conditions and their families, like Greg’s, who could really benefit from our support but who are currently having to manage the fear and isolation that comes with having a very ill child on their own.
“As we mark the start of Children’s Hospice Week today, while we want to take time to celebrate our work here at Tŷ Hafan, we also want to remind people that there is still so much more to do and there are so many more families who need our support.” For more information and to make a donation go to www.tyhafan.org
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