William's Story When William’s mum Kate needed time to nurse her terminally ill dad, there was only one place she could turn to for help to care for her seriously ill son. It took just a call to Tŷ Gobaith, and the team came to her rescue, having William to stay and giving Kate precious time to comfort her dad and plan his end of life care. Kate says she cannot thank the hospice team enough for giving her precious days to be with her dad and hold his hand. “It just gave me that time to concentrate on him, without having to worry about what was going on at home and who was looking after Will, because it can be very demanding.” William was born in the summer of 2018, just three months after Kate’s mum had died suddenly of a heart condition. Kate’s parents had just sold their home in Spain and were moving back to the UK to spend more time with their family. Kate had enjoyed a healthy pregnancy and everything seemed to be going according to plan when she went into hospital with her partner Andy to be induced. Tragically, during his birth, William’s brain was starved of oxygen and he suffered severe hypoxic brain damage. “Initially he was born without a heartbeat. He was resuscitated and taken to neonatal intensive care, and we were told to expect the worst. It was a huge whirlwind because I was very poorly too and the first I knew was when I was in intensive care myself,” Kate recalls. “It was a shock to see Will in a different state to what I expected. You go through pregnancy with all the checks and everything is good – but I don’t think anything can prepare you. Will was the chubbiest, beautiful baby and you wouldn’t have known anything was wrong other than the severe bruising he had and the tubes going into his body. Difficult decisions “Me and Andy made the difficult decision that with the severity of Will’s problems we were probably going to have to let him go. We had the delicate business of bringing in his older brothers and saying to them that they could say hello to Will and hold his hand and kiss him, but say goodbye too just in case. We just didn’t know what was going to happen. “An MRI scan showed that Will had Grade 3 Hypoxic Ischemic Encephalopathy. Initially we weren’t sure what that would mean for him, but he took life into his own hands and after a month we were able to take him home. The first time we took him into his bedroom was very emotional because we never thought we would get the chance to use that room we had made for him.” William was referred to Tŷ Gobaith by his consultant. Kate had heard of Hope House and Tŷ Gobaith because she had signed up to play our fundraising lottery, but she, like many others, never thought that she would need our help. “Me and Will came to stay along with his brother Sam, who was about 10. The nurses were incredible with Will and it was really lovely for me to have some time with Sam because he had to grow up really quickly after Will was born,” says Kate. It was amazing “It was huge letting someone else look after Will but the fact we could stay too was comforting. Sam thought it was amazing and said it was just like one big family rather than a hospital because the equipment was there, but not obvious. He told his older brothers Josh and Jacob who had been a bit nervous and it gave them confidence to know Will was safe and well looked after.” During this time Kate’s dad Terry had been diagnosed with incurable cancer and was undergoing chemotherapy. She and Andy had sadly separated too. “A year after Dad’s first diagnosis, we found out his cancer had spread. He was in hospital and really scared and I was torn because I really needed to be with him. Andy has a condition which means he is unable to care for Will overnight and I didn’t know what to do. So I phoned Tŷ Gobaith to see if they could help,” she remembers. In safe hands “I was able to drop Will off at really short notice and know he was in safe hands. I can’t thank them enough for just giving me those precious days so me and my sister Nic could stay with Dad and hold his hand because he was terrified about dying on his own in hospital. I arranged to bring him home for end of life care, and I just couldn’t have done that without the support of Tŷ Gobaith. “The boys struggled with losing their grandparents too and were shocked by what life had dealt them. Sam and Josh got involved with sibling activities at Tŷ Gobaith like canoeing. I think they worried it might be like a therapy group all sat in a circle, but they had a laugh and I think it helped them to know that other people have similar life experiences.” Kate says it is really hard to think of the future: “That’s really really difficult. Will has defied the odds so far but it is always at the back of your mind and we live for every day because the future is so uncertain. Will was so unwell in November and that showed me how quickly he can deteriorate. “But we’ve also all learned so much from Will already about life and love and understanding and patience. It is a true life lesson. His brothers all adore him and he is the total focus of this family. It is a bumpy road ahead, we all know that, but how bumpy, who knows? Only Will can decide that. Always someone there “What I do know is that life so far would have been a huge struggle without Tŷ Gobaith. They are just our extended family and a really important part of our lives. Whatever challenges I face they will always offer to help. It is so comforting to know that there is always someone lovely there at the end of the phone 24/7, 365 days of the year. “It is comforting to know too that should the worst happen Tŷ Gobaith will be there. I’ve seen the Snowflake Suite and heard other families’ stories about how the help from Tŷ Gobaith doesn’t end when your child’s life ends. It is something that you never want to think about, but it is always there at the back of my mind and it is a huge comfort to know that we would be given time and support, that the staff would know us and they’d know Will and it wouldn’t be awkward. I could just be a mum and not have to hold it all together because I know they will hold us all together. “Nobody ever wants to use a children’s hospice, but when you do need it you are so grateful that it is there.” If you are inspired by William's story and would like to help make sure that every local child with a life-threatening condition and their family can receive our support please support William's Appeal.