Thomas’s Story

When Thomas was born his mum Lucy, dad Paul and two year old sister Emily were over the moon to welcome the new addition to their family.

Everything seemed fine, but the next morning, Lucy noticed a rash on Thomas’s face and hands; he had an infection and was rushed to the neonatal unit.

It was noticed there that Thomas’s head was small. Numerous tests and scans later, Thomas was diagnosed as having a brain condition. He was just 11 days old.

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Looking after Thomas 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.

When Thomas was four months old, the family were encouraged to think about getting support from a children’s hospice. Lucy and Paul 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 to interact and have fun with other children. When they came to Ty 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 Ty Gobaith for respite care. Often, his mum, dad and sister stay with him at Ty Gobaith, which Emily loves! She gets the chance to spend time and have fun with Thomas, and other brothers and sisters who understand what it is like to live with a sibling with a life-threatening condition. Lucy and Paul can take the opportunity to relax and recharge at Ty Gobaith; they don’t need to worry about Thomas, the nurses are here to look after all his 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 at Ty Gobaith – 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 Ty 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.

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