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.
Thomas’s life-threatening condition affects his mobility and movement meaning that 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, 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 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 respite care. Often, his mum, dad and sister stay with him at Tŷ 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 Tŷ 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 Tŷ 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 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 out on our minibus and having fun in the playroom. But, 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.
If you can help us to support other children like Thomas, and their families, please donate now or sign up to our lottery. Our lottery players provide us with a regular income so that we can be here for children today and in the future.
Every week three local families face their biggest fear and their child dies, tragically we can only afford to help one. Please help us reach more children and their families by donating today. We believe no one should face the death of a child alone. With your support, they won’t have to.
When your child is diagnosed with an incurable condition your heart breaks and your world falls apart. When your child dies suddenly something dies in you too.
Facing that journey on your own is terrifying. You feel so alone. Without Hope House Children's Hospices you struggle on often isolated in your pain and grief. We must help.
Every week three local families face their biggest fear and their child dies. Tragically Hope House can only afford to help one.
Hope House Children's Hospices cannot stop children dying but we can stop families suffering on their own. When they are facing the most devastating loss of their lives we must be there. We must reach every child mum dad sister and brother who need us.
Pain beyond words needs support without limits.