Ty Hafan

family stories - Rhys

felix's story

When Dan and Alex’s baby son Felix was just a few months old, his parents received the devastating news that their little boy had a life-limiting condition and would never walk, talk or even live past infancy.

The joy and hope that most brand new parents experience turned to despair as they contemplated their future and the dark times that were ahead of them.

“I was completely broken said Dan.

Felix’s condition is called Lissencephaly Miller-Dieker which means that on a daily basis, he has seizures. He’s peg fed through a tube directly into his stomach and has frequent pneumonia. However, despite his initial prognosis, Felix is now 6 years old and doing well. He’s a beautiful, happy, loving little boy and he loves his visits to Tŷ Hafan, where his parents say he gets ‘spoiled rotten’ by the nurses who know him so well.

“Having a poorly child means having a lot of pressure and rarely being able to ever get a break from it because you become the main carer”, said Alex.

Felix

“The energy, vibrancy and friendly atmosphere make it a place you enjoy going to and being around other families in a similar situation. It helps remove any stigma around what you're dealing with, which is vital early on”.

“Felix’s needs are complex and change all the time and we do get to a point where things just become very, very hard. When we do get to that point, it’s great to have Tŷ Hafan there to be able to take that responsibility away for just a few days, so we can do very ordinary things like have a full night’s sleep or maybe just watch a TV programme or a film without any of Felix’s alarms going off in the house. We can take a break from that stress and strain and have a bit of time just to be husband and wife or mum and dad to Felix and our daughter Lottie”.

 

Dan and Alex are members of the Tŷ Hafan mums’ and dads’ support groups – two separate networks of parents of children who have used or are using Tŷ Hafan.

Dan explained how the group helps him. “We are all in the same situation, we all share that bond. It’s not something that has to be talked about – that’s the difference between that and when you’re out with people who are just having normal lives. With the dads’ group, everyone knows exactly what it’s like; you don’t have to explain anything. We can talk freely, we can talk about the hardships, the highs and the lows of the situation – everyone just gets it.”

Download a PDF copy of Felix's Story here

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