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“I couldn’t have coped without  Hafan 

Khloe and her son Llewie are just one of the hundreds of families with children with a life-limiting condition who are supported by  Hafan and  Gobaith. Here Khloe shares how  Hafan has helped her and her son, and why she thinks sustainable funding for children’s hospices in Wales is so important.

Ty Hafan CEO Maria Timon Samra

My name is Khloe and I live together in South Wales with my son Llewie, who is four-years-old. I grew up here and we have moved back after living in Hampshire for my work due to needing more family support and me having to leave my job due to Llewie’s care needs. Llewie has an acquired brain injury and requires 2:1 care 24/7. I am a single mum so this has its challenges.  

We first got referred to Tŷ Hafan in June 2019 after moving to Wales from Hampshire. 

 Hafan has given us respite for the past few years and also support for helping with his behaviour and coping with medical procedures. It’s given me a rest when I have been exhausted beyond words and local council services couldn’t help as we didn’t have care set up as they can’t supply carers.  

 Hafan has given us respite throughout the pandemic, we were unlucky enough to be flooded out of our home just before the pandemic,  Hafan came to the house and offered emotional support and gave us a gift voucher to help with the clean up effort and get back on our feet. They have contacted me throughout the pandemic and when our carers have been unable to come to work due to isolation they have provided care, or on move week when we moved from one Airbnb to another Airbnb during the pandemic they had Llewie so he was in a safe environment and I could concentrate on the move and creating a safe environment for Llewie to come into again.  

It’s been invaluable and I couldn’t have coped without  Hafan.  

elain and martha

I would be exhausted and Llewie wouldn’t be in as safe of an environment as he is. It’s also meant I’m happier and so is Llewie. He loves  Hafan, he giggles and smiles as he runs around there and the staff make us feel like part of their family. 

I think  Hafan should receive a lot more money from the Welsh Government because, it’s a service that is referred to by medical professionals - you don’t come to it through choice. If a health board refers you it should be 100% paid for.  

Children like Llewie are too complex to be looked after by grandmas and grandpas like most children and the parents will not receive that much needed break unless it’s from a service like  Hafan. Direct payments offer some support but it’s never a complete break where you can switch off, you are always that person to be called on. 

I can’t thank  Hafan enough, it’s a magical place and somewhere where we are happy, I can be mum and not a carer and we can bond as a family.