Saying goodbye to their precious son was heartbreaking for Jenn O’Brien and Andrew Evans from Cardiff.
Christmas will be a particularly difficult time for the couple as this time last year, their beautiful two-and-a-half year old son, Oscar, was still in their lives.
To keep Oscar’s memory alive, Jenn and Andrew, together with their family and friends, have been on a fundraising mission to raise funds for the charity that they describe as their “lifeline.”
Tŷ Hafan, the family hospice for young lives, has journeyed with the family from their very first visit, right through to the present day as they continue to struggle with the loss of their first child.
Incredibly, Oscar’s family and friends have raised more than £10,000 for the charity in just five months.
Every time the couple fundraise for Tŷ Hafan, whether cycling 52 miles, taking part in the charity’s Midnight Sleep Walk or organising bucket collections, they wear t-shirts and put up banners covered with pictures of their “one-in-a million” son.
“We just want to keep his memory going and it’s a way to give something back to Tŷ Hafan after all they’ve done for us,” said Andrew.
Oscar suffered from a rare genetic condition called Menkes Disease. It meant he needed 24-hour care and the couple knew that, sadly, his life would be short.
“When he was born, everything was fine. He was feeding and he was doing really well,” said Andrew.
But when Oscar was six months old, everything changed.
“One Wednesday afternoon, Jenn picked him up and he was all floppy and white so she rang an ambulance,” said Andrew.
“Thankfully, my sister was there and she works in a special baby care unit so she knew what to do."
The couple adored Oscar and during his short life, made sure he was as happy and comfortable as possible.
Andrew said: “When we found out about his condition, we were hoping they had made a mistake.
"When you’re going to be a dad, you think about taking your son to the football or having your first pint with him. Knowing that wouldn’t happen was heartbreaking.”
Oscar was 15 months old when the family first visited Tŷ Hafan.
“The first thing we thought when we walked through the doors was, wow! The staff know exactly what to say and they made us feel loved,” said Andrew.
The family visited the hospice on a number of occasions and Oscar adored ‘Stay and Play’ sessions at the hospice.
“He loved being sung to, going in the hydro pool and lying on the waterbed,” said Andrew.
A day before Oscar’s second birthday in December last year, his condition deteriorated rapidly and the couple were told to prepare for the worst.
“We were told he wouldn’t make it so we stayed with him at Tŷ Hafan for two weeks," said Andrew. "He gradually got better and better so we went home. He was fine for the next six months, and then, all of a sudden, he was gone.”
Their Tŷ Hafan Family Support Practitioner Hannah Williams helped the family organise Oscar’s funeral and his celebration of life which was held at Cardiff City Stadium.
“Hannah has been absolutely amazing. I really don’t know how we would have coped without her support,” said Andrew.
“We sang Mr Tumble at his funeral and we released 12 balloons outside the stadium as it was his birthday on the 12th.
“Two white horses took him to Thornhill Crematorium and one of the proudest moments for me, was walking him though the chapel. Jenn carried him in to the world and I carried him out.”
And Tŷ Hafan’s support will be available to Jen and Andrew for however long they need it.
“They are always on the end of the phone, and we know if we ever want to visit or even rant at someone, they are always there,” said Andrew.
The family will continue to raise funds for Tŷ Hafan and are planning to take part in a number of fundraising events next year.
Andrew said: “We are part of the Tŷ Hafan family now. We will never forget what they have done for us and will continue to raise funds in Oscar’s memory so they can help more families like ours.”
It costs £3.7m a year to provide Tŷ Hafan’s state-of-the-art facilities at Sully and its support services to families in the community.