2 minute read
esmai’s story
In every issue of Cwtch, we take the opportunity to highlight at least one family story to show readers the real-world impact their support has on the lives of those who need us.
No two families experience the same journey with Tˆy Hafan. Part of the challenge and, undoubtedly, part of the joy of the job, is working closely with each family to determine how we can best support them. That could be allowing the child to express their feelings through music, giving siblings an outlet to be themselves, or helping parents to cope, all while providing expert medical care where it is needed. Four-year-old Esmai from Barry was diagnosed with CHARGE Syndrome shortly after she was born. She and her mum, Sami, were referred to Tˆy Hafan in 2017 when Esmai was just nine months old and they have been using our services ever since. “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. This has left me with depression and anxiety. “Tˆy 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 Tˆy 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 Tˆy 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. “Esmai is constantly asking if she can go to Tˆy 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 so good for both of us, for our mental and physical health. “Tˆy 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.”
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“I don’t know what we would do without it.”
