Just hours after Osian Liddlell was born, his parents’ joy turned to fear, as their precious baby boy was transferred to the neo natal intensive care unit. A rash had spread across his face and body and doctors immediately started carrying out tests to find out why. The next few nerve wracking weeks saw Osian’s mum Anna and dad Huw becoming increasingly anxious as each test eliminated any suspected infections one by one, and doctors concluded that the cause must be genetic.
Anna explained: “We took Oshi home with a list of symptoms and waited for confirmation of his suspected condition. When the results of their investigations came back, the doctors put a journal in front of us, pointed at an article and said “we think it’s that”. No one had heard of it. Our world descended into chaos”.
It’s always so calm there. I know the drill and I know the staff and I can plan what I’m doing with my day instead of feeling chaotic
Osian was diagnosed with Aicardi-Goutieres Syndrome 1, a genetic degenerative autoimmune disorder, causing brain damage, seizures, respiratory and heart problems. It’s so rare that only 400 people in the world have ever been known to have it, and around 40% don’t survive past the age of five.
Anna added: “There was no research base to inform any treatment, no answers, no comparisons, and that’s still the case now. We can stabilise Oshi’s symptoms with medication and make him as comfortable as possible, but every single medication has a side effect, so it’s a case of suck it and see. We just take Oshi for who he is, and if the meds work, they work”.
The family was referred to Tŷ Hafan and the palliative care team when Oshi was three weeks old.
“It was New Year’s Eve and we got a last minute cancellation. We were desperate for help, anxious and exhausted. There we were - Huw, Osian and I all together in the hospice whilst most other people were out celebrating the New Year. We just felt massive relief and for the first time in Oshi’s young life, we were in an environment where we felt calm. We were with people who could help us, and if something happened, they’d know what to do. Osian was safe”.
Anna continued: “For those first months of Oshi’s life, I remember thinking whenever it was out time to go to Tŷ Hafan, “I’ve just got to get there, and then everything will be OK’. The nurses would take Oshi into their care, and I could just relax. It’s nothing like a hospital. Those nurses are a replacement ‘me’. As well as medication, they give cuddles and love, which is just what Oshi needs”.
It’s one of the happiest places I’ve ever been.
“I tend to stay with Oshi when he’s at Tŷ Hafan. I have my own room but I pop back and forth to see him in his room, and he’s always OK. It’s always so calm there. I know the drill and I know the staff and I can plan what I’m doing with my day instead of feeling chaotic”.
Anna continued: “It’s important that everybody involved in Oshi’s life understands what Tŷ Hafan does. We love the fact that our mums can go there too and just enjoy time with Oshi without any anxiety about his symptoms or medication – they can just have a cuddle with him. It’s one of the happiest places I’ve ever been. The staff are always happy, and the smiles and giggles of the children take over everything”.