“CHARGE Syndrome means that Esmai is partly blind and partly deaf. She also has to be fed through a tube, she has no balance, regular seizures, sleeping issues and behavioural issues,” says Sami. “She’s doing really well at the moment, but it’s full on looking after her. I don’t get a lot of sleep most days. This has left me with depression and anxiety.
“Tŷ Hafan is the only respite that Esmai and I get. For the first couple of years, when we got to stay there for a couple of days – twice a year - I stayed with her in the hospice.
“Then, when Covid hit, we were told we’d only get one visit a year, although lately, because we live in Barry and are close to the hospice, Esmai has been able to go in for a couple more breaks as they have called us at very short notice when they have had a bed free.
“Looking after Esmai is a 24/7 job so when she goes to Tŷ Hafan for respite care, it enables me to do the simplest little things, like have a bath, and sleep. Things that most other people totally take for granted.
“Without Tŷ Hafan I would struggle big time as right now, it’s the only respite I get. My mum used to help me with her quite a lot, but we’ve not been able to see her properly for a year now due to the pandemic.
“I can’t believe that Tŷ Hafan gets so little money from the Welsh Government. It’s awful. It’s a vital service and people like me and Esmai get referred there by the health service. I think that the Welsh Government should give Tŷ Hafan lots more money, every year, to help keep it running.
“Esmai is constantly asking if can she go to Ty Hafan now. She loves her room there. When I drop her off, she gives me a little wave and says "bye mum" and then off she goes. It’s is so good for both of us, for our mental and physical health.
“Tŷ Hafan is the only help outside my family that I have ever been offered. When I stayed there with Esmai, it was brilliant. I had lovely food cooked for me and a comfortable bed. It was like being in a hotel except there I could actually get some sleep.
“I don’t know what we would do without it.”