In 2003 our life changed forever. Our first child, Liam, had been born successfully in 2002 and, rather unexpectedly, three months later we found out that we were expecting again.
On 13 April 2003 Sian went into labour and was taken in to a neighbour’s house until the ambulance crew arrived. They attempted to deliver, but clearly realised something was not right and they were rushed straight to the hospital. It was here that we discovered that our beautiful baby girl Ciara had no heart beat.
Ciara was a tiny princess with jet black hair. Unfortunately, she had Edwards Syndrome, which is a chromosomal abnormality caused by the presence of all, or part of, an extra 18th chromosome. This had affected her internal organs.
It was at this point that we encountered the work of Sands indirectly, through the great work they do with healthcare professionals. They encouraged us to spend time with our daughter and we spent a number of precious hours holding her. We took a photo and foot/hand prints too. Although the funeral arrangements are now a blur, everything was arranged for us.
The period that followed was tough. My own parents had also suffered a stillbirth and had never got to hold my brother or indeed have a funeral. People at that time did not know what to say and as a result it was difficult for them to talk to others about how they felt. We were fortunate that the support we got was fantastic.
Ciara’s death has fuelled us ever since. To coincide with my 40th birthday I decided to raise £40,000 for Sands by running 40 miles and cycling 40 miles throughout the year, entering various half marathons and 10ks. At this point I was 17st7lbs.
In the years that have followed we have continued to raise money through charity balls, cook books and numerous sporting challenges, including a nonstop running relay from London to Glasgow! I’m now almost 7st lighter and have competed in 12 marathons throughout the world. My wife even completed her first marathon on Ciara’s anniversary.
We constantly strive to raise awareness and have an annual event Ciara’s Miles, encouraging people to do a mile for Ciara. No donation is required and this is largely awareness focused. In 2015 we encouraged people to do an act of kindness and changed the name to Ciara’s Smiles!
Carolyn Bray, Fundraising and Events Manager, said: “Sean and Sian are probably two of the most inspirational people I’ve met. Over the years of their fundraising they’ve raised well over £150,000 with friends and family in memory of their daughter Ciara, for 5 different charities, and one of those is Sands. These guys have raised money in so many ways, from balls, to Ciara’s miles. They ran a non-stop relay from London to Glasgow (Square to Square), cycled/ran from Inverness to Dumfries and completed various marathons including New York, London and Chicago. Even Ciara’s siblings, get involved. The impact their efforts have made is unequivocal. The couple are amazing supporters of the charity, the true meaning of Sands Champions.”
Sian and Sean Casey have been nominated as part of 40 volunteers for #Sands40. Join them at Sands 40th Anniversary Conference on 17th November 2018 in Glasgow.
Sands is marking its 40th anniversary this year and we would like to say thank you for the incredible support and contribution that our dedicated volunteers make across the UK to support bereaved parents and anyone affected by the death of a baby.
We will be hosting an awards ceremony during the Sands 40th Anniversary Conference to celebrate the wide range of volunteering involvement in Sands and acknowledge 40 volunteers for their dedication and commitment.