A mother-of-four from Llandough will be taking part in the Brecon Carreg Porthcawl 10K to raise money for Tŷ Hafan.

Sian Kelly, 56, is running in memory of her daughter Mair who had lots of love and support from the children’s hospice.

During Sian’s pregnancy doctors discovered Mair was going to be small. However, when she was born in May 2002, she was struggling to breathe and she was put on a ventilator in intensive care. Doctors carried out tests and that’s when she was diagnosed with Edwards Syndrome, a rare genetic condition caused by an extra copy of chromosome 18. It meant she’d experience significant developmental delays and was unlikely to survive past her first birthday.

Sian, who works as a nurse practitioner, said: “Mair’s hands were bent inwards and her heart and lungs were affected which made breathing difficult and she was fed via a tube. At first I didn’t think it was anything too serious, I just thought that Mair would need a bit of help throughout life. But then we were told it was life limiting and she wasn’t going to survive long. That was extremely difficult to hear.”

Mair spent two weeks in hospital before coming home. She had ongoing support from her nurses and was given medication for her heart. The family were also put in touch with Tŷ Hafan for additional support.

Sian said: “It was all a bit of a blur. We were just going through the motions one day at a time. Tŷ Hafan were so supportive and from the moment we stepped through the door it felt like a second home. It had a lovely feeling about it.”

Sian, her husband Greg and their eldest daughter Rhiannon, who was nine at the time, would regularly stay at the on-site flats for some respite while the Tŷ Hafan nurses helped look after Mair. It meant that Rhiannon also got some time with her mum and dad to do things like go out for the day or go to the cinema.

Sian, who is also mum to Ffion and Finley and grandmother to Elias, said: “Rhiannon was so thrilled to be a big sister but with Mair so poorly, it was tough. We spent a lot of time focussing on Mair, but with the support from Tŷ Hafan it meant Rhiannon could have time for her too.”

Tŷ Hafan helped Rhiannon talk about her emotions through play and offered counselling sessions to the family too.

However, devastatingly, in March 2003, Mair became ill. She was just 10 months old she passed away at Llandough Hospital.

Sian said: “Mair was a very happy and cheeky character and despite being unwell she gave us all the run around.

“In March 2003 she had a lot of respiratory infections and we knew she wasn’t going to survive much longer. The staff at the hospital were amazing. We could have taken Mair to Tŷ Hafan but we didn’t want to transport her. They allowed us to stay with her in the room for as long as we needed to say our goodbyes.

“I then carried her down to the mortuary. That was the most traumatic thing I’ve ever had to do and telling Rhiannon, she was distraught. I now wish she’d been at the hospital with us but at the time, we thought it was the right thing to keep her at home.”

Mair’s ashes were buried in Penarth cemetery next to her grandad and the family go often to visit her. Her name was converted into chaffinch birdsong, and she has her own pebble in Tŷ Hafan’s memorial garden too.

Sian said: “Tŷ Hafan really made sure to include the whole family in everything. We still use their services even now, but for a different reason. They really are amazing and we’re always trying to do things to raise money so we can give back to other families who also need them.

“I will always have four children and she’s still very much part of the family, while my youngest two didn’t get to meet her, there’s photos of Mair around the house and we all talk about her. We’ll never forget Mair and Tŷ Hafan haven’t forgotten her either. It’s such a special place and I’m so grateful for all that they do.”

Sian has run a couple of half marathons and Greg has completed the Welsh Three Peaks Challenge to raise money for the hospice. Now, Sian is taking on the Brecon Carreg Porthcawl 10K in July and the Cardiff Half Marathon in October to continue her fundraising.

Tŷ Hafan is the lead charity of the Brecon Carreg Porthcawl 10K. Last year the cost of delivering its care services was £6.6m – with only 13% of that covered by recurring statutory funding. With 2025 seeing a 19% increase in the number of new referrals to them, fundraising is more important than ever in ensuring they can continue helping families in Wales as they face the unthinkable when their child’s life is cut short.

Matt Newman, Chief Executive at event organisers Run 4 Wales, added: “Tŷ Hafan is such a fantastic place that helps so many children and their families and we’re so pleased to be supporting them once again as lead charity at the Brecon Carreg Porthcawl 10K. We wish Sian the best of luck with her training and fundraising for such a worthwhile cause as she runs in memory of Mair.”