Stories Family Stories Thomas's Story When Thomas was born his mum Lucy, dad Paul and two year old sister Emily were over the moon to welcome him to their family. Everything seemed fine, but the next morning Lucy noticed a rash on Thomas’s face and hands. He was rushed to the neonatal unit with an infection. Numerous tests and scans later, Thomas was diagnosed as having a brain condition. He was just 11 days old. Thomas’s life-threatening condition affects his mobility and movement. He has to be fully supported in his wheel chair at all times. He struggles to see properly, has to be tube-fed and his communication is limited to crying, laughing (which he does a lot of) and smiling (which he does even more of). Looking after him is a full-time job for his mum Lucy, who has had to give up her career to provide round the clock care for Thomas. Coming to Tŷ Gobaith When Thomas was four months old, Lucy and Paul were encouraged to think about getting support from a children’s hospice. They were reluctant - they didn’t want to take Thomas to a children’s hospice as they were afraid to see what his future may hold. It took until Thomas was a year old for the family to be able to take the difficult decision and visit a hospice. They needed support; they needed a break to recharge their batteries, the opportunity to spend some quality time with Emily, and they wanted Thomas to be able interact and have fun with other children. When they came to Tŷ Gobaith, they were so glad they did. The hospice wasn’t what they thought it would be, it was better, and it felt right. Since then, Thomas has been coming to Tŷ Gobaith for regular respite care. Often, his mum, dad and sister stay with him, which Emily loves! She gets the chance to have fun with Thomas, and other brothers and sisters who understand what it is like to live with a brother or sister with a life-threatening condition. Lucy and Paul can take the opportunity to relax and recharge at Tŷ Gobaith - the nurses are here to look after all Thomas's medical needs so they can concentrate on spending precious time together and making special memories. If they feel they need to, the family can also access counselling and advice - support is available for the whole family, without limits. When your child is vulnerable and non verbal it is difficult to trust others to look after them. The Care Team here at Tŷ Gobaith are specialists with a wealth of experience and knowledge which has enabled the family to completely trust them to take good care of Thomas during his stays, which for any parent, is vital. Thomas is a happy little boy and smiles and laughs all the time, despite his life-threatening condition. He loves being surrounded by people, going on trips in our minibus and having fun in the playroom. His favourite activity is the Eye Gaze, a special computer which enables him to communicate and interact, just using his eyes. His family work tirelessly to look after him and coming to Tŷ Gobaith gives them all a chance to switch off from being full time carers and focus on being a family. Your support means we can help Thomas and more children like him. Please donate now! Thank you!