When most people think of a children’s hospice they often expect it to be a sombre place filled with sadness. But after spending some time at Ty Hafan I found it’s actually quite the opposite. Laughter fills the halls as families make everlasting memories for themselves – and potentially the last for their child.
Ty Hafan’s hospice, overlooking the serene view of the sea in Sully in the Vale of Glamorgan, has been providing essential end-of-life care for children in a safe space in Wales for 25 years. It is often described at a place you wish you didn’t need but you are glad to have.
Specialists at Ty Hafan provide care and support services for children families at their base in south Wales as well as part of their outreach programme to help people in the community. Not only do they care for children with life-shortening conditions but also support their families throughout treatment and bereavement.
The late Suzanne Goodall, founder of Ty Hafan, registered the charity in 1990 and opened the building in Sully nine years later thanks to fundraising. Ms Goodall opened the first children’s hospice in Wales which now covers mid, south, and west Wales as they are still few and far between.
Once a child and family is referred to Ty Hafan the support they are given never stops as they offer end-of-life care, symptom management, respite stays, therapy and sensory play support, and bereavement support as well as a offering a safe space for people to visit. One person who benefits from the work done at Ty Hafan is 17-year-old Lilly Kendall who has received care from the hospice since she was nine.
Lilly Kendall -Credit:WalesOnline/Rob Browne
When Lilly was nine she was diagnosed with restrictive cardiomyopathy, interstitial lung disease, and pulmonary hypertension. Doctors referred her to Ty Hafan for palliative care and she has been supported by the charity ever since.
Lilly had never heard of Ty Hafan but when she first arrived she knew it was somewhere she wanted to stay. She said: “I love it here. You’ve got your own privacy, you can go off and do your own things, and they do lots of events.”
Lilly stays at the hospice for respite care every month, depending on availability of beds, so she can have much-needed rest. When Lilly turns 18 next year she will no longer receive medical care from the staff at Ty Hafan but she says she will always come back to visit the place she’s “grown up with”. She said: “It’s going to be very strange not coming here.”
In 1993 Ty Hafan obtained the site where the hospice currently stands in Sully and building began in 1996 taking three years. Surrounding the building is a fully accessible play area, a memorial garden, and serene places for families to sit with their children in their final moments taking in the beautiful sea view and the sounds of the birds.
A special feature of the garden is the gazebo where the Birdsong Project brings a sentimental memoriam to the area. When a Ty Hafan child dies their name is translated into Morse code and then translated into birdsong. The song is played through a speaker near the gazebo. As birds learn songs through imitation is it thought that the children’s names will be echoed in the the skies forever.
The memorial garden -Credit:WalesOnline/Rob Browne
There are rooms within the facility for specialist care including a music room and art room along with a hydrotherapy pool that was installed in 2014. Lynne Phelps is the head of family wellbeing and outreach services at Ty Hafan, managing the team of specialists responsible for the emotional wellbeing services for families.
Lynne has had many roles during her 15 years at the hospice and introduced the sibling support services helping the siblings of children with life-threatening conditions. She said it’s not what she expected but working there is the “biggest privilege”.
Head of family wellbeing and outreach services Lynne Phelps -Credit:WalesOnline/Rob Browne
She said: “As I drove up the drive and walked into the hospice it’s just got this aura about it. You think it’s going to be this sad place and I remember people saying to me: ‘Are you sure you want to? It sounds really difficult and you’re quite sensitive person.’ However, it’s just not like that. You can always hear laughter and singing. It’s all about making memories. And you really feel that as soon as you walk in here.
“It’s just the most wonderful place to work and it’s the biggest privilege. I think it’s more than a job. People who come to work for Ty Hafan you do it because you have a passion to support the children and families. And it’s such a privilege to meet our children, families, no matter how long or short that may be of that child’s journey.
“To have that very special time to meet them and then support the family for however long they need it. We don’t have a cut-off time for our bereavement services. We have families that have come back before the child died, before I started, and they still come in to our memorials. And 20, 25 years on and it’s just a special place and they like to come back and spend time in the grounds.”
One memory that Lynne will never forget is the time she and the staff at Ty Hafan hosted Christmas in July for a terminally-ill teenager who wasn’t going to make it to December. As she loved Gavin & Stacey and was looking forward to the special in 2019 the staff performed their own show for her as well as making Christmas dinner, opening presents, and organising a visit from Santa.
(Left to right) Sofia Dennison, who is looked after at Ty Hafan, is held by her grandmother Debbie Dennison alongside Sarah Dunbar, Sofia’s aunt, with her daughter Myla Dunbar -Credit:WalesOnline/Rob Browne
Ty Hafan offer events for not just the children seeking medical care but their families allowing Sarah Dunbar to spend time with her two-year-old niece Sofia Dennison at the hospice while bringing along her own daughter Myla. Sofia has been visiting Ty Hafan since she was six months old after being diagnosed with a brain tumour.
Doctors were unaware of the tumour on Sofia’s brain at birth but after she began having absent seizures an MRI scan showed the tumour. She had an operation as a baby in which doctors took out 90% of the tumour but Sofia will still live with the effects as she grows up.
Sofia’s doctors believe she may have problems with her development as she gets older as she still isn’t able to walk independently and her speech is delayed. But she is a happy little girl who enjoys attending the groups and events at the hospice. For the latest health and Covid news sign up to our newsletter here.
Sarah said: “You don’t feel like you’re in a hospice when you’re here. Everyone is so lovely and will chat to you. Sofia is really happy when she’s here and likes to be around other people.”
Deputy lead nurse Hannah White -Credit:WalesOnline/Rob Browne
Hannah White is a deputy lead nurse at Ty Hafan and has been there for around two and half years, coming back after working there as a student during Covid. She has built “amazing connections” with the children in her care and their families and said Ty Hafan is nowhere like she’s ever worked before.
Although Hannah had heard “amazing” things about the hospice before working there it was nothing like she expected. She said: “I think the word ‘hospice’ freaks everyone out. You’re expecting sadness and death and dying but it’s really not that way. There’s so much happiness. Obviously there’s a sad element there but we try and capture small moments for families to bring the light out of the dark.”
The staff working for Ty Hafan – not just the team at the facility but those working at the charity shops, in the community, and behind the scenes – are an integral part of the charity. Newly-appointed chief executive Irfan Rees said the charity exists because of the fundraisers who he said are equally as important as the staff at the hospice.
Care costs at Ty Hafan for 2024 amount to around £6.7m with only just over 12% (around £800,000) of funding coming from the Welsh Government and NHS Wales, which is a 40% drop from the preceding year. That leaves the charity relying on fundraising or non-government sources to help support them and help them provide care for children and family in need.
Across south Wales Ty Hafan have 17 retail stores that fundraise as well as a lottery that help support costs. Partnerships with corporate businesses, fundraising events, and community fundraising efforts “keep the doors open”, said Irfan.
Chief executive Irfan Rees -Credit:WalesOnline/Rob Browne
“We have to just be really, really creative. You have to have a broad base and we just have to keep going with those efforts because that’s what keeps the doors open ultimately.
“We’ve got a collaborative relationship with Welsh Government and I believe they recognise the value of the sector and are committed to supporting us. But in the short term there’s an absolute gap this year and long-term we need to get a sustainable solution and we want to work closely with government to secure that.”
There are plenty of ways you can help Ty Hafan fundraise for the £5.6m they need each year. Visit their website to find out more here.