Matthew and Micaela were 21 when they had their baby boy, Cai.

The joy of being first-time parents in a baby bubble quickly turned to fear and heartbreak when Cai became seriously unwell at just a few weeks old. A cardiac arrest left him with extensive brain injuries and cerebral palsy.

Matthew and Micaela were told the agonizing news that their baby only had one day to live.

But Cai survived the next day. And then the next. And the next. Even though he was still very unwell, Matthew and Micaela were just happy and grateful that their baby was alive.

But their relief turned into further devastation. Cai was diagnosed with an incredibly rare, incurable condition, Vici syndrome, which meant his life would be short.

The medical team looking after Cai said that he wouldn’t live past two years old, and he would live those short years with profound physical challenges. Heartbroken, they grieved for the life they thought they would have with their son.

Life was going to be very different for this young family. Instead of taking Cai to football practice on weekends, they lived a life of uncertainty beside his hospital bed.

Cai’s medical team offered them a referral to Tŷ Hafan, but the thought of Cai going to a hospice seemed so final and Matthew and Micaela were not ready to say goodbye.

When they came visit, the hospice was not what they expected. It was warm, bright and homely, full of smiles and laughter. They instantly felt it was a safe and friendly place, full of love and life.

But there was no time to process what was happening. Weeks turned into months, and they had to live for each day.

The financial pressures and time constraints that came with caring for Cai full time meant they were just getting by and surviving. But they knew Tŷ Hafan was there for them every step of the way.

Even through all the dark days, Cai would bring sunshine. He was always a happy little boy, full of character. He showed immense courage and bravery throughout his journey. He had the most infectious smile and, all his life, he defied the odds that were stacked against him.

When the time came to say goodbye, Matthew and Micaela knew they wanted Cai to die peacefully at Tŷ Hafan. The moment he entered the hospice, he opened his eyes. He was somewhere he felt safe.

Matthew and Micaela knew their baby boy, and they knew those were going to be his last moments. He had never been that poorly before. Seeing him like that was even more painful than him not being here anymore.

Cai died when he was 11 years old. His death was peaceful. There was no struggle. It wasn’t horrible. He just fell asleep in his dad’s arms and didn’t wake up.

He was surrounded with love and, when he died, Matthew and Micaela didn’t feel alone in their grief. They felt the staff at Tŷ Hafan lost Cai, too. The emotion, support and love the staff showed brought great comfort.

It’s because of your generosity that we could be there for Matt, Micaela and Cai throughout Cai’s life, death and beyond.

But there is more work to be done. It’s only with donations that we will be able to reach every family in Wales who needs us. Please help us make that Wales a reality.