A mother-of-four from Llandough is preparing to take on the Brecon Carreg Porthcawl 10K this summer to raise money for children's hospice Tŷ Hafan, in memory of her daughter Mair.
Sian Kelly, 56, is running in tribute to Mair, who received care and support from Tŷ Hafan after being diagnosed with Edwards Syndrome, a rare and life-limiting genetic condition. Mair was born in May 2002 and spent her early life receiving specialist care following complications identified at birth. Despite her condition, Sian remembers her as a 'happy and cheeky character'.
Loving memories of Mair
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.”
The family were introduced to Tŷ Hafan soon after Mair’s diagnosis and received respite care, counselling support and help for the wider family, including daughter Rhiannon.
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.”
She added that the hospice helped the whole family through difficult times: “Rhiannon was so thrilled to be a big sister, but with Mair so poorly, it was tough. We spent a lot of time focusing on Mair, but with the support from Tŷ Hafan, it meant Rhiannon could have time for her too.”
Family love and loss
Mair sadly died in March 2003, aged 10 months, at Llandough Hospital. Sian said the staff allowed the family time to say their goodbyes.
Sian said: “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.”
She added: “I will always have four children and she’s still very much part of the family… 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 is now continuing her fundraising efforts by taking on the Porthcawl 10K in July, followed by the Cardiff Half Marathon in October, to support other families receiving care from Tŷ Hafan.
For more information about the Brecon Carreg Porthcawl 10K taking place on Sunday, July 5, visit: porthcawl10k.co.uk/ or to donate to Sian’s fundraising page visit: porthcawl10k26.enthuse.com/pf/sian—kelly
