Iwan's Story ‘We’re going on an adventure,’ Debbie told her four-year-old twins Iwan and Sion when they set off on their first visit to Tŷ Gobaith. “I bought them little suitcases to take on our adventure and they both loved it from the start with all the toys and people making a fuss of them. We haven’t got a big extended family so having that support network at Tŷ Gobaith has been really important,” says Debbie. That first visit was 12 years ago, and since then the Tŷ Gobaith team has been there to offer help and support to Debbie and Dave and their two sons on every step of their journey. The boys were born at 38 weeks, Sion a bouncing 6lb 6oz but Iwan a lot smaller at just 3lb 9oz. Iwan had breathing difficulties and spent the first six months of his life in and out of hospital. It was a difficult time for Debbie and Dave, dividing their days between Sion at home and Iwan in hospital. When Iwan was two and a half a scan revealed he had microcephaly, a brain condition that causes major developmental problems and can be life-threatening. He would need physiotherapy and a lot of support. Debbie and Dave continued to juggle family life – but when the boys were four they decided that the time was right to visit Tŷ Gobaith and see what help was available. Breaking point “It was like breaking point really because we’d all been ill all winter with different sorts of things,” remembers Debbie. “It ended up with Iwan having chicken pox and then pneumonia. We’d just had enough and needed some extra support.” She bought the twins new suitcases and told them they were all going on an adventure. Sion was so excited that he called Tŷ Gobaith ‘The Adventure’ for years to come! “Sion loved it from the start. We had a little family room and the nurses looked after Iwan. Sion used to keep going and asking them for his brother back!” says Debbie. “Then, over time, we came to know everyone and we started to leave Iwan at Tŷ Gobaith for respite so we could spend a little bit more time with Sion. Sibling support “Sion’s been very, very good over the years, but having respite for Iwan meant we could take him on holiday and do activities that weren’t possible for Iwan in a wheelchair, such as visiting all the local castles. “Sion also spent time with Ceinwen, the Sibling Support Worker, doing all sorts of activities with the other children whose brothers and sisters use Tŷ Gobaith. Even now, if Ceinwen is arranging something Sion is happy to go because she gets on well with him and gives him more confidence. “Ceinwen also introduced Sion to Tom, whose sister uses Tŷ Gobaith. They’re a similar age and get on well together so she takes them out doing things with just them like going to the cinema.” As well as going to Tŷ Gobaith for respite, Iwan is sometimes cared for at home by the Tŷ Gobaith nurses or taken out on day trips. “Iwan loves going out and about in cars and minibuses and he loves company and being in the middle of things. He is really sociable,” adds Debbie. Our lifeline “After 12 years we’ve got to know the Tŷ Gobaith team really well and it is so relaxed. They walk in and ask what’s happening and it’s just like having family walk in. It’s like leaving Iwan with your family. “If Iwan is in hospital they will even come and visit us there and stay with Iwan while I have a little break.” Iwan has now been diagnosed with a rare genetic condition, Fox G1 Syndrome, which affects only 400 children in the world but more are being diagnosed every week. Debbie and Dave don’t know what the future holds, but in the meantime their son is loving his visits to Tŷ Gobaith and his days at Tir Morfa Community Special School in Rhyl where his favourite subject is craft and messy play! Adds Debbie: “If Tŷ Gobaith wasn’t there I don’t know what we’d have done. Having somewhere for Iwan to go which is like staying with family is really good. I don’t think we could have done it without them. Tŷ Gobaith is our lifeline really.” Your support means we can help Iwan and more children like him. Please donate now. Thank you!