Thomas's Story

“Not only did Demelza give us time to say goodbye but it gave everyone who knew Thomas time to say goodbye.”
Thomas was diagnosed with the rare genetic disorder, Hunter disease, when he was four. The condition causes problems such as joint pain, discomfort and breathlessness. Thomas and his family had been getting support from Demelza Kent in Sittingbourne as well as from the Demelza community team at their home in East Sussex for several years when his condition deteriorated.

In February 2013 Thomas was booked in for a stay at the hospice with dad Dave while mum Mette and her friends redecorated the house. Dave said: “Thomas and I came to Demelza for four days. He was walking around the hospice the first day but on the second night staff woke me up and told me he would not make it through the night. He had pneumonia."

Mette and siblings Mia and Mikkel rushed to join Dave by Thomas’s bedside as the respite visit turned into end of life care. “He was unconscious for four days. We were preparing for him to die, then suddenly he came around,” said Dave.

Thomas clung on to life for several more months and Mette explained how important being at Demelza was: “It didn’t stop the staff taking him out. We went to the seaside, we went to the zoo. The staff were exceptional, they were so caring, so empathetic.”

Dave added: ““One day we had a little party in his bedroom with loud music and singing. He lived life to the full even when he was at the end. Not only did Demelza give us time to say goodbye but it gave everyone who knew Thomas time to say goodbye. Thomas’ headmaster came several times.”

As well as memory-making and emotional support Demelza also gave practical help - from the community nursing team making phone calls and liaising with various agencies to staff at the hospice tackling paperwork.

Mette added: “We didn’t need to worry about the cooking, cleaning, washing - we could just focus on Thomas.”

Could you help us support more bereaved parents? Find out how to donate to Demelza.